News Updates


RSS Feed
BIO Patient and Health Advocacy Summit
10/23/2014

On October 14 and 15, ICA staff attended the BIO Patient and Health Advocacy Summit in Washington, DC. The host was the Biotechnology Industry Organization, the world’s largest trade association representing biotechnology centers and related organizations. This significant meeting brought together voluntary and non-profit health and patient advocacy organizations along with the biotechnology industry for two days of discourse on current public policy issues, and to share best practices, and exchange ideas. During the summit, kicked off by keynote speaker Rep. Joe Pitts (R-PA), topics such as access to care post-Affordable Care Act, increasing patient voice in drug development, and preserving patient access to innovative treatments were discussed.

53rd Meeting of the National Advisory Council for Complementary and Alternative Medicine
10/23/2014

On October 10, an ICA staff member attended the 53rd Meeting of the National Advisory Council for Complementary and Alternative Medicine (NACCAM). NACCAM has the responsibility of advising, consulting with, and making recommendations to the Director of National Center for Complementary and Alternative Medicine (NCCAM) on matters relating to the research activities and functions of the Center. Of note are the thirteen new research studies initiated by NCCAM aimed at addressing pain and related conditions with non-drug approaches. In addition, it was reported that NIH has created three new awards – totaling up to $19.4 million - for research to address the growing proportion of US citizens that have multiple chronic medical conditions. New research findings were also presented at the meeting, among them the results of a study partially funded by NCCAM which found that some bacteria that share our bodies may manufacture antibiotics and that these substances may be capable of fighting infection.

Giving Tuesday is Coming!
10/23/2014

It’s not too early to get ready for Giving Tuesday! Giving Tuesday inspires personal philanthropy and encourages bigger, better, and smarter charitable giving during the holiday season, showing that the world truly gives as good as it gets. The third annual Giving Tuesday will take place on December 2, 2014. Giving Tuesday brings together diverse networks of people, large corporations, small businesses, and nonprofits across an ever-expanding range of new media platforms to encourage and amplify small acts of kindness in the service of changing our world for the better. No gift is too small, so consider giving to ICA this Giving Tuesday.

30 Years/30 Stories
10/23/2014

Please help ICA celebrate 30 years of advocacy and hope by submitting your personal IC story. To commemorate our 30th anniversary, ICA would like to collect and publish thirty stories of hope, encouragement, and successful living with IC to inspire others. Stories will be accepted from patients and healthcare providers, as well as family and friends of IC patients who have been affected by their IC. Check out the ICA Voices of Hope Blog to read previous entries. For more details, check out our Voices of Hope blog guidelines here: http://www.ichelp.org/page.aspx?pid=632. Submissions may be shorter than the usual requirement – a paragraph or two is ideal, and don’t forget to send your photo with your blog submission. We’re excited to read and share all the stories!

ICA Website Feedback Survey
10/23/2014

We want to make sure that we’re providing you with an easy user experience on the ICA website! Please take a moment to complete this short survey.

Click here to take the survey!

Homeopathy for Urinary Tract Infections
10/16/2014

On Tuesday, October 21, at 8 PM Eastern, the National Center for Homeopathy (NCH) will be holding a free webinar, Homeopathy for Urinary Tract Infections. Join NCH with Tanya Renner, CCH to find out how you can use homeopathy successfully to break the cycle of repetitive bladder infections. Go here to register for this free webinar: https://www3.gotomeeting.com/register/591675126

The New Normal after Bladder Removal Surgery
10/16/2014

While major surgery resulting in bladder removal, enlargement, or urinary diversion is the sixth and final line of treatment for IC and is only recommended when everything else has failed, some patients have found great relief as a result. The Bladder Cancer Advocacy Network is holding a free webinar - The New Normal after Bladder Removal Surgery, Part II – on Tuesday, October 21, at 8 PM Eastern. What to expect after bladder removal surgery, preventing complications, and choosing a diversion will be discussed by:

  • Tracy Downs, MD, Associate Professor of Urology, Director of Bladder Cancer and Intravesical Programs, University of Wisconsin
  • Deborah Hensley, BSN, RN, CURN, Department of Urology, UT Southwestern Medical Center

If you’d like to view this free webinar, register here: https://attendee.gotowebinar.com/register/4851965954345897986

NOTE: Part I of The New Normal after Bladder Removal Surgery can be viewed here: http://www.bcan.org/learn/educational-programs/webinars/new-normal-bladder-removal-surgery/

Women In Pain Conference
10/16/2014

Last month For Grace held a uniquely empowering event for women in pain, their caregivers, and the healthcare professionals who treat them.

This year’s theme, “Getting Real: Transforming Hidden Truths Into Positive Action,” focused on Chronic Pain and Coping, with a special emphasis on Positive Actions and Forgiveness. The webcast for this event is now available online at http://www.forgrace.org/women/in/pain/C271/.

ICHope Pain Management Tool Webinar – Now Available!
10/6/2014

Were you unable to join us for the free ICHope Pain Management Tool webinar? If so, it is now available for viewing on ICA’s BrightTalk Channel. The webinar featured Dr. Mary Ruth Velicki walking viewers through the benefits and easy steps to use the ICHope Pain Management Tool to help overcome their battle with IC-related pain. Dr. Velicki is a physical therapist, IC patient, and author of the book Healing Through Chronic Pain, A Physical Therapist’s Personal Journey of Body, Mind, Spirit Transformation. View the webinar today!

ICA Intimacy Facebook Chat
10/6/2014

If you missed the ICA Intimacy Facebook Chat, or would just like to review what was discussed, all final questions (both answered and unanswered) and their answers from the chat have been posted on the ICA website at www.ichelp.org/FBChatIntimacy. ICA thanks all participants for making this exciting event a success! If you still have unanswered question, don't forget to check out ICA’s Online Support Community where you can be connected to hundreds of other people experiencing similar symptoms, situations, experiences, and emotions.

Healthcare Provider Survey Winner
10/3/2014

The Summer 2014 ICA Update was a special issue mailed to over 100,000 healthcare providers across the country to raise IC awareness and education. As an incentive for their feedback, ICA entered those healthcare providers who completed a survey into a drawing for a new MS Surface tablet. And the lucky recipient was Dr. Yuktanand Singh. Dr. Singh is in general practice and pediatrics in Saline, Michigan. He refers his patients to ICA because, "ICA is a great resource for patients suffering from nonspecific pelvic pain. It also keeps the medical community aware of IC as a differential diagnosis of pelvic pain. As for treating IC, I prefer the holistic methods discussed on this site." Congratulations, Dr. Singh!

Hydrocodone Rescheduling Update
10/3/2014

The US Drug Enforcement Administration (DEA) issued a clarification of its rules concerning refills of existing prescriptions of hydrocodone-containing combination products (HCCP). The DEA has determined that existing prescriptions for HCCP with remaining refills may be refilled until April 8, 2015. It was previously reported that these refills would be cancelled on October 6.However, what is not clear is how pharmacies will treat these already-existing prescriptions. Some pharmacies may choose not to honor these remaining refills, but may instead require a new prescription. In order to ensure you continue to receive the medications you need after October 6, it is a good idea to work out a plan of action with your healthcare provider as soon as possible.

ICHope Pain Management Tool Webinar – Now Available!
9/26/2014

Were you unable to join us last night for the free ICHope Pain Management Tool webinar? If so, it is now available for viewing on ICA’s BrightTalk Channel. The webinar featured Dr. Mary Ruth Velicki walking viewers through the benefits and easy steps to use the ICHope Pain Management Tool to help overcome their battle with IC-related pain. Dr. Velicki is a physical therapist, IC patient, and author of the book Healing Through Chronic Pain, A Physical Therapist’s Personal Journey of Body, Mind, Spirit Transformation. After her presentation, Dr. Velicki answered viewer questions and shared her personal experience with participants. Interested in trying ICHope Pain Management Tool? View the webinar today! 

If you participated in the webinar last night, we’d love your opinion by taking our brief survey to help us provide more beneficial and improved events in the future.

IC Awareness Month
9/26/2014

September is IC Awareness Month, and raising public awareness of IC through education and advocacy is a vital part of the mission and work ICA does every day on your behalf. While ICA continues to work at conquering IC and changing lives, there’s so much you can do, too! For instance, if you notice someone on ICA’s Online Support Community that’s been recently diagnosed, reach out and help educate him/her and let them know they aren’t alone. Write your representative or senator to make your voice heard and to raise awareness at the highest levels of government. In addition, encourage your compassionate and knowledgeable healthcare providers to be included on ICA’s Online Healthcare Provider Registry if they aren’t already. And consider supporting research because so much of what we now know about IC has been learned through scientific discovery. These are but a few of the many things you can do during IC Awareness Month and throughout the year. Join us now in keeping up this important work!

9th DEA National Prescription Drug Take Back Day
9/26/2014

Don’t flush your unused or expired meds! Flushing old or expired medications down the drain is dangerous and bad for the environment. The US Drug Enforcement Administration is holding a free medication disposal on Saturday, September 27, 2014 from 10 a.m. until 2 p.m. To find your local turn in site, click here to visit the DEA website or call 1-800-882-9539 to find a collection site near you.

TMJ Association’s Scientific Meeting
9/26/2014

ICA’s Executive Director, Lee Claassen, recently served on a panel of patient advocates during the TMJ Association’s Scientific Meeting in Bethesda, Maryland. The meeting focused on the epigenetic and genetic factors in temporomandibular disorders (TMD) and their overlapping pain conditions, one of which is IC. Panel participants, including patient advocates for fibromyalgia and chronic fatigue syndrome, shared the diagnostics and currently recommended treatments for their constituents. Members of the panel commended and encouraged the researchers in the audience to continue their work in identifying the causes, potential connections, and treatments for overlapping chronic pain conditions.

ICA is Moving!
9/26/2014

On Friday, September 26, the ICA office will be relocating to 7918 Jones Branch Drive, Suite 300, McLean, VA 22102. Please note that our phones will be down from Thursday, September 25, 2014 after 5 p.m until Monday, September 29. However, callers can still leave voicemail messages. If you have a question, you are encouraged to use email (icamail@ichelp.org) to contact us between Friday and Monday, but please allow a bit extra time for a response while we get moved in and reorganized. Thank you!

ICHope Pain Management Tool Free Webinar – Register Today!
9/17/2014

Do you have pain caused by IC? Do you have a family member who has pain caused by IC? Are you curious how to use ICA’s ICHope Online Pain Management Tool, or maybe even how to start the process? If you answered yes to any of these questions, then this webinar is for you!

Join ICA on Thursday, September 25th at 8:00 PM EST for a free webinar as we walk through the benefits and easy steps to use the ICHope Pain Management Tool. This webinar will also feature Dr. Mary Ruth Velicki, a physical therapist, IC patient, and author of the book Healing Through Chronic Pain, A Physical Therapist’s Personal Journey of Body, Mind, Spirit Transformation. View her “Voices of Hope” story.

Dr. Velicki will answer your questions, share her personal experience with participants and showcase how the ICHope Pain Management Tool can help you overcome your battle with IC-related pain.

When you register for the webinar, you will be able to ask your questions in advance to ensure anonymity. Not able to join us at that time? No worries, the webinar will be recorded for you to view at a later time.

Log in to the ICHope Pain Management Tool today and send your questions to ICA at ICAmail@ichelp.org!

Click here to register!

9th DEA National Prescription Drug Take Back Day
9/12/2014

Don’t flush your unused or expired meds! Flushing old or expired medications down the drain is dangerous and bad for the environment. The US Drug Enforcement Administration is holding a free medication disposal on Saturday, September 27, 2014 from 10 a.m. until 2 p.m. Visit www.dea.gov, or call 1-800-882-9539.

To find your local turn in site, click here to visit the DEA website or call 1-800-882-9539 to find a collection site near you.

Changes Coming for Some Pain Medications
9/12/2014

On August 22, 2014, the US Drug Enforcement Administration reclassified hydrocodone combination medications into the more restrictive Schedule II category. The DEA’s new rules go into effect on October 6, 2014, and will cause some significant changes in the way pain medications are prescribed and dispensed. Below is a list of some medications that will be affected by the new rules.

  • Vicodin, Vicodin ES, Vicodin HP
  • Lortab, Lorcet, Lorcet Plus
  • Norco
  • Zydone
  • Vicoprofen
  • Any other medication that includes the word “hydrocodone” and one of the following:
    • Aspirin
    • ASA
    • Acetaminophen
    • APAP
    • Ibuprofen
  • Cough medications including hydrocodone

After the new rule goes into effect, pharmacies will no longer be allowed to refill prescriptions for these medications. Any remaining refills will no longer be valid, and a new prescription will be required to obtain a fresh supply. In addition, your prescriber will not be permitted to call in a prescription for any of the above medications. You will need a new prescription every time. Your healthcare provider will need to decide whether or not an office visit is necessary before writing a new prescription. However, it will still be possible to obtain a prescription for up to three months’ worth of medication, but the prescriber will need to know how to do so and write the prescription in the proper way. In order to ensure you continue to receive the medications you need after October 6, it is a good idea to work out a plan of action with your healthcare provider as soon as possible.

ICHope Online Pain Management Tool
9/11/2014

No one knows you better than you! Check out ICA's ICHope Online Pain Management Tool for help developing better control over your IC pain and improving your quality of life. This free interactive program — the first of its kind — is designed to help IC patients learn to better manage their IC pain by adopting healthy, positive behaviors to prevent or minimize pain and to cope with pain that does occur. In addition, it shows patients how to implement these strategies — at their own pace, when they are ready — to help manage pain from IC. ICHope was created uniquely for IC patients, who, along with ICA staff and experts in the community, were integral in the development of this program. Are you ready to manage your pain? To get started, visit www.ichelp.org/ichope and learn more about ICHope.

If you’ve already begun the process of managing or minimizing your IC pain using ICA's ICHope Online Pain Management Tool, now is the time to finish what you started. Don’t forget to log in every 30 days to update your profile and take full advantage of the program. The next steps to greater understanding and relief are awaiting completion. In order to get the full benefit of ICHope, please return and continue your journey to healing and complete the next stage of the tool – you’ll be glad you did!

30th Anniversary Survey
9/5/2014

This year marks ICA’s 30th anniversary! Since 1984, the ICA has been advocating for IC patients, raising awareness, and funding and promoting research. Thirty years of hope for the 12 million men and women suffering with IC! We know there’s still work to be done, but to help us celebrate the occasion in our next issue of ICA Update, we’d love your feedback about how far ICA and IC-related issues have progressed. The survey should only take a few minutes of your time.

Click here to take the survey.

IC Awareness Month
9/4/2014

September is IC Awareness Month, and raising public awareness of IC is nothing new to ICA – education and advocacy have been vital parts of our mission and work every day for the last thirty years. ICA will continue to work at conquering IC and changing lives and there’s so much you can do, too! For instance, if you notice someone on ICA’s Online Community that’s been recently diagnosed, reach out and help educate him/her and let them know they aren’t alone. Write your representative or senator to make your voice heard and to raise awareness at the highest levels of government. In addition, encourage your healthcare providers to be included on ICA’s Online Healthcare Provider Registry if they aren’t already. And consider supporting research because so much of what we now know about IC has been learned through scientific discovery. These are but a few of the many things you can do during IC Awareness Month and throughout the year. Join us in keeping up this important work!

https://www.ichelp.org/HealthcareProviderRegistry
National Pain Awareness Month
9/4/2014

September is an important month for anyone living with pain because it is National Pain Awareness Month. For thirty days, the US Pain Foundation will draw public attention to the hardships, struggles and trials of those suffering from chronic pain. This month, and every month, ICA continues to strive to educate the public and raise awareness about how chronic pain impacts us all. It is the intention of Pain Awareness Month to create hope and compassion for those with pain, and to constantly remind them they are heard and not alone.

ICA Because You Care Book Series
8/27/2014

Do you or a loved one suffer from IC? ICA has volumes of information available for IC sufferers, but what about those who care about an IC patient. Donors who have given $250 or more receive free online access to ICA’s Because You Care book series...just one of the many benefits of being an ICA Patron! The series includes Exploring the Unique Intimacy Issues of People with Interstitial Cystitis, Information about Interstitial Cystitis for Family and Friends of People with IC, and Being Your Own Best Advocate.

ICA highly recommends these books to further open the lines of communication, encourage productive discussions, and inspire trust, compassion, love, and hope so you may help your loved one in as many ways as possible because you care.

Click here to donate and download the books today!

Thank You for Your Participation
8/27/2014

If you participated in the recent Facebook Chat on IC & Intimacy, thank you! Events such as the chat depend on your participation to be successful, and by doing so, you help many others facing similar issues. In order to continue with programs such as this, we’d love your feedback by taking our ICA Intimacy Facebook Chat survey. In addition, for those questions that we were unable to answer during the chat, we will post their answers as part of a transcript on our website at www.ichelp.org/FBChatIntimacy in the next few weeks. The identities of participants will be kept confidential and will not be disclosed in the transcript.

Hydrocodone Reclassified by DEA
8/27/2014

Last Thursday, the Drug Enforcement Agency ruled that hydrocodone combination products, some of the most widely prescribed pain medications, would be reclassified as a Schedule II drug, a more restrictive class reserved for the most dangerous medicines. This policy change has been debated for some time, and is an effort to curb opioid abuse, but the more restrictive policy could also inconvenience millions of Americans. There is a concern that too many opioids are being misused. However, with as many as 100 million Americans suffering from some sort of chronic pain, reclassifying these drugs will make it more difficult for those people with legitimate needs to get the medications they require. The new classification takes effect in early October 2014. An estimated 25 million Americans are on automatic refills of hydrocodone, but once in place, patients can only be written prescriptions for a 90-day period, and refills won't be able to be called in to a pharmacy. About 130 million prescriptions were written for hydrocodone last year. This rule only impacts hydrocodone that is combined with an over-the-counter painkiller like acetaminophen or aspirin. Pure hydrocodone is already a Schedule II drug.

ICA has not sat on the sidelines while policies impacting IC sufferers are debated and implemented. ICA representatives have testified before the FDA on behalf of IC patients everywhere on many occasions and are always advocating for IC patients, either independently, or in conjunction with other chronic pain organizations. We have repeatedly urged the FDA to ensure that patients with chronic pain conditions like IC have access to critical pain medications as the Agency moves forward with regulatory work on the serious issues of opioid addiction and misuse, and will continue to do so.

Log In for ICA's Intimacy Facebook Chat
8/21/2014

ICA will be hosting a one-hour Facebook chat on Intimacy and IC today, Thursday, August 21 at 7 p.m. Eastern. Our content expert will be:

If you want to join us, please login to your Facebook account and go to the ICA Facebook page at: www.facebook.com/InterstitialCystitisAssociation.

Have a question about being intimate with your partner, despite your IC? Wondering how to maintain intimacy with your partner? Our panelist will field all of your questions about intimacy and IC. Submit your questions in advance by emailing ICA at icamail@ichelp.org and putting “Facebook Chat Question” in the subject line.

Start thinking of questions for this informative discussion and join us tonight at 7pm EST.

ICA Board Member Appointed to MAPP Executive Committee
8/7/2014

ICA is excited to announce that ICA Board Member and Medical Advisory Liason, Dr. Robert Moldwin, has been selected as the newest member of the MAPP Executive Committee. When asked about this exciting development, Dr. Moldwin commented that, “I'm really honored to work with such a brilliant and dynamic group of people. I have high hopes that the Multidisciplinary Approach to the Study of Chronic Pelvic Pain will yield new and exciting discoveries that will help us achieve the most important goal... improving the lives of our patients.” ICA wishes Dr. Moldwin and his fellow investigators well in their search for answers.

Have a Story of Success?
8/7/2014

There are so many reasons to feel hopeful. Everyone has a story. Here’s your chance to be an inspiration to others. Please share your story of hope, encouragement, and success with interstitial cystitis on ICA’s Voices of Hope blog. You never know who you might help.

Stories of hope, encouragement, and successful living with IC will be accepted from patients and healthcare providers, as well as family and friends of IC patients who have been affected by their IC. For more details, check out our Voices of Hope blog guidelines.

Update Your ICA User Profile
8/7/2014

Make sure your ICA user profile is up to date so you can stay apprised of all the newest developments with ICA and receive important IC-related news.

More Relief Awaits!
8/7/2014

Congratulations! You’ve begun the process of managing or minimizing your IC pain using ICHope Online Pain Management Tool. Now is the time to finish what you started. The next steps to greater understanding and relief are awaiting completion. In order to get the full benefit of ICHope, please return and continue your journey to healing and complete the next stage of the tool – you’ll be glad you did!

Nutrition and Wellness for Pelvic and Sexual Health
8/7/2014

Evidence-Based Nutrition and Wellness Coaching for Pelvic and Sexual Health, hosted by Bella Physical Therapy and presented by Jessica Drummond, MPT, CCN, CHC will be held on September 20th & 21st, 2014 in Fair Lawn, NJ. Attendees will be presented with approaches to hands-on physical therapy, building a skilled pelvic health team for their patients, and the latest research as it relates specifically to endometriosis, PCOS, vulvodynia, or other pelvic health conditions. In addition, valuable coaching skills for optimizing patient outcomes will also be discussed. While patients will benefit by participating in this course, it can also be recognized for continuing education units for licensed healthcare professionals who specialize in women’s health. For more information, please visit: http://customhormonehealing.com/go/register-nj

Share Your Experience in Accessing Pain Meds
7/31/2014

Are your pain management needs being impacted by the increasingly tougher regulations to curb misuse of controlled pain medications? Do you have difficulty obtaining or filling prescriptions for medications that help keep your pain under control? If so, we want to hear from you!

Share your stories and experiences to help ICA advocate for legitimate patient access to these necessary pain medications by completing this short survey. It should only take 5 minutes of your time.

Click here to take the survey!

Nutrition and Wellness for Pelvic and Sexual Health
7/24/2014

Evidence-Based Nutrition and Wellness Coaching for Pelvic and Sexual Health, hosted by Bella Physical Therapy and presented by Jessica Drummond, MPT, CCN, CHC will be held on September 20th & 21st, 2014 in Fair Lawn, NJ. Attendees will be presented with approaches to hands-on physical therapy, building a skilled pelvic health team for their patients, and the latest research as it relates specifically to endometriosis, PCOS, vulvodynia, or other pelvic health conditions. In addition, valuable coaching skills for optimizing patient outcomes will also be discussed. While patients will benefit by participating in this course, it can also be recognized for continuing education units for licensed healthcare professionals who specialize in women’s health. For more information, please visit: http://customhormonehealing.com/go/register-nj

ICA Diet Facebook Chat Transcript Now Available
7/24/2014

If you missed the ICA Diet Facebook Chat, or would just like to review what was discussed, check out all the final questions and their answers from the chat on the ICA website at www.ichelp.org/FBChatDiet. ICA thanks all participants for making this exciting event a success!

If you participated, we’d love your feedback by taking our ICA Diet Facebook Chat survey.

Manage Your Pain Your Way
7/24/2014

No one knows you better than you! Check out ICHope Online Pain Management Tool for help developing better control over your IC pain and improving your quality of life. 

We want your feedback! Let us know whether you have used ICHope Online Pain Management Tool by taking a short survey. It is confidential and should take less than a minute to complete. Your feedback allows us to better support you.
Take the Survey

Online Support Community
7/24/2014

Do you feel like no one understands what it’s like to have IC? You are not alone. Now with over 400 members, ICA’s Online Support Community is a great place of peace, hope, advice, and comfort for patients, family members, friends, and healthcare professionals looking for ways to better understand the impact of interstitial cystitis (IC). We invite you to join us in the online support community, where you can connect with hundreds of other people experiencing similar symptoms, situations, and emotions. 

ICA’s Patient Forum Sessions are Available as Webinars
7/24/2014

You can still view the sessions from ICA’s Patient Forum. Listen to many prominent experts in the field of IC research and treatment in these sessions, called “truly empowering” by those that attended the Patient Forum. Gain a wealth of information from the free and informative sessions, which include topics such as, “Integral Approaches to Treating IC,” “When Standard Treatments Fail,” “IC Diet: Friendly Fats,” and “A Time for Two: Intimacy, Sexuality and IC.”

Read More

ICA Attending Joint AUGS/IUGA Annual Meeting
7/24/2014

ICA staff is currently attending the American Urogynecologic Society (AUGS) and the International Urogynecological Association (IUGA) Scientific Meeting. AUGS and IUGA are jointly hosting their annual scientific meetings in Washington, DC at the Washington Convention Center. The joint meeting will serve as the largest venue for those in the field of urogynecology and female pelvic medicine and reconstructive surgery to come together for education, networking and sharing.

ICA Diet Facebook Chat - We Want Your Feedback!
7/2/2014

If you missed the ICA Diet Facebook Chat, or would just like to review what was discussed, check out the Facebook post below. ICA thanks all participants for making this exciting event a success!

If you participated, we’d love your feedback by taking our ICA Diet Facebook Chat survey. Don't forget to check out ICA’s Online Support Community where you can be connected to hundreds of other people experiencing similar symptoms, situations, experiences, and emotions. All of this is made possible through donations from people like you. Please consider supporting the ICA so that we can continue programs such as these.

 
Happy 4th of July!
7/2/2014

Happy 238th birthday, America! Will you be celebrating this Independence Day weekend by attending numerous cook outs and spending time with family and friends? To join in on the fun and avoid flare ups, nutritionist Julie Beyer has a few recommendations to consider when grilling out this summer. www.ichelp.org/SummertimeMeals

ICA Online Pain Management Tool - Have You Moved on to the Next Stage?
7/2/2014

Have you tried ICA’s complimentary online pain management tool, ICHope Self-Management Module. If so, don’t forget to log in every 30 days to update your profile and take full advantage of the program! This free interactive program – the first of its kind – is designed to help IC patients learn to better manage their IC pain by adopting healthy, positive behaviors to prevent or minimize pain and to cope with pain that does occur. In addition, it shows patients how to implement these strategies — at their own pace, when they are ready — to help manage pain from IC. ICHope was created uniquely for IC patients, who, along with ICA staff and experts in the community, were integral in the development of this program. Are you ready to manage your pain? To get started, visit www.ichelp.org/ichope and learn more about ICHope.

ICA Travels
6/27/2014

ICA staff recently participated in the following meetings to raise awareness about IC-related issues and to explore collaborative projects to improve patients’ lives:

  • Overactive Bladder Patient Advocacy Roundtable hosted by the Urology Care Foundation, the official foundation of the American Urological Association. The purpose of the Roundtable was to assess the needs and gaps in overactive bladder patient advocacy in terms of public awareness, patient education, services to patients, doctor/patient dialog, and political advocacy. A wide range of patient advocacy groups participated and presented the services their organizations provide as well as their perspective of the unmet needs of people living with overactive bladder. The public’s general knowledge and understanding of the “ages and stages” of pelvic health was also discussed. The group then brainstormed and prioritized potential joint projects to address the gaps and meet the needs that had been identified. Stay tuned for more details on the collaborative initiatives as the projects are further defined and timelines are developed.

  • ESSIC, whose members are scientists and/or medical practitioners from all over the world, is the International Society for the Study of Bladder Pain Syndrome (BPS). The Annual Meeting which was hosted for the first time in the U.S. this year in Philadelphia, provided a forum to exchange research results, experiences, and ideas on BPS/IC. This year’s agenda focused on the discussion of Hunner lesion and the implications of its clinical finding. Lee Claassen, ICA’s Executive Director, shared the podium with Dr. Vicki Ratner, ICA’s Founder and President Emeritus and presented the progress that ICA has made since its beginning and the work and initiatives in which it is still involved today.

Summer 2014 ICA Update
6/27/2014

While hard copies of the next issue of the ICA Update will be arriving in mailboxes in the next few weeks ICA’s donors that have contributed to the organization at the annual giving level of Supporter or higher can view it online immediately at: www.ichelp.org/ICAUpdateBackIssues This special issue of the ICA Update was written specifically for clinicians and is being distributed to:

  • Community Health Centers
  • Federal Health Agencies
  • College Health Centers
  • Family Physicians
  • Internal Medicine Physicians
  • Emergency Physicians
  • Nurse Practitioners
  • Physician Assistants
White House Summit on Heroin and Prescription Drugs: Federal, State, and Community Responses
6/27/2014

On June 19, ICA staff viewed the live feed of the White House Summit on Heroin and Prescription Drugs: Federal, State, and Community Responses which highlighted the public health and safety issues surrounding prescription painkillers. The goal of the summit was to discuss trends and challenges in dealing with the wave of opioid abuse in the United States, identify innovative practices and models, and discuss how practitioners at every level can help reduce overdose deaths and public health consequences. Participants included US Attorney General Eric Holder, Vermont Governor Peter Shumlin, National Institute on Drug Abuse Director Dr. Nora Volkow, and experts from across the country on education, treatment, and overdose and infectious disease prevention. Issues explored included expanding drug treatment access to millions through the Affordable Care Act, encouraging people and medical professionals to learn the signs and symptoms of problematic drug use and to intervene before substance use becomes a chronic condition. While discussing opioids and pain, Dr. Volkow made the important point that there are no safe medications to treat chronic pain. The summit participants discussed the use of naloxone, a drug that is easy to administer and has been used effectively to reverse opioid overdose and has already saved thousands of lives. Lastly, it was emphasized that the vast majority of people who are addicted to heroin and/or opioids began their addictive behaviors very young and that prescription drugs were usually not their first abuse of a drug.

ICA Diet Facebook Chat
6/27/2014

If you missed the ICA Diet Facebook Chat, or would just like to review what was discussed, all final questions (both answered and unanswered) and their answers from the chat will be posted on the ICA website at www.ichelp.org/FBChatDiet in the next week. ICA thanks all participants for making this exciting event a success!

If you participated, we’d love your feedback by taking our ICA Diet Facebook Chat survey. Don't forget to check out ICA’s Online Support Community where you can be connected to hundreds of other people experiencing similar symptoms, situations, experiences, and emotions. All of this is made possible through donations from people like you. Please consider supporting the ICA so that we can continue programs such as these.

ICA Restructures Membership Program
6/27/2014

ICA has restructured its membership program to give you more benefits and a greater variety of support options. As a $50 Supporter, you’ll be kept abreast of the latest IC research, news, and ICA announcements. You’ll also receive online access to ICA brochures and fact sheets, a downloadable restroom access card for printing, and online access to the two most recent issues of ICA Update. As a $100 Advocate, you’ll get all that plus online access to ALL past issues of ICA Update. Go to www.ichelp.org/donate to learn more.

ICA Diet Facebook Chat - Mark Your Calendar!
6/11/2014

Mark your calendars! ICA will be hosting a one-hour Facebook chat about IC and diet on Wednesday, June 25th at 7:00pm ET. Our content experts will include:

  • Barbara Shorter, EdD, RD, CDN, Associate Professor of Nutrition, Long Island University
  • Barb Zarnikow, ICA Board Co-Chair
  • Rhonda Garrett, ICA Information Specialist

Have a question about a particular food? Wondering how to handle food sensitivities? Our panelists will field all of your questions about IC and diet.

ICA Calling for Applications for Board of Directors
6/5/2014

Apply by July 15, 2014

The Interstitial Cystitis Association (ICA) is calling for applications of knowledgeable, engaged, and inspired volunteers to lead, advise, and support the activities of the ICA by serving on its Board of Directors for a three-year term. The Board plays a leadership role in implementing strategic direction while securing funds to advance the ICA and its mission. Board members collectively represent a range of skills, experience, and expertise in the public, private, and non-profit sectors. The Board meets four times annually of which at least one meeting is conducted in-person/face-to-face.

On the Road Again
6/5/2014

ICA is on the road yet again! Thursday and Friday, ICA staff will be attending the Urology Care Foundation 2014 Overactive Bladder Roundtable. By partnering with other patient advocacy and medical organizations at this event, ICA hopes to raise awareness about IC-related issues by collectively working to develop potential collaborative projects to help improve patient lives.

On Friday, ICA is attending the 52nd Meeting of the National Advisory Council for Complementary and Alternative Medicine (NACCAM) at the National Institutes of Health. Through this meeting, ICA hopes to help define and determine the usefulness and safety of various complementary and alternative medicine interventions and their roles in improving the health and healthcare of IC patients.

June is Men’s Health Month!
6/5/2014

Men get IC, too! In fact, new studies have shown as many as 2 to 4 million American men may have IC. National Men’s Health Week is June 9-15, 2014. Now in its 20th year, National Men's Health Week is celebrated each year the week leading up to Father's Day. It’s a wonderful time to focus on how men with IC can take care of their health for themselves and for the well-being of their families. It’s also a great time to help raise awareness of IC in men.

If you are a man with IC, take a look at the wonderful resources we have for you:

Alliance for Pelvic Pain Retreat
6/5/2014

It’s a busy time of year for the ICA. ICA was in New York City for the second Alliance for Pelvic Pain Retreat. The Retreat was a place of love and support for the attendees and hosts, which included Dr. Robert Echenberg, a member of ICA’s Medical Advisory Board. Among the topics discussed were the many causes of and treatments for chronic pelvic pain and pelvic floor dysfunction. Upon reflection, ICA was left with some important take-away messages for sufferers, including:

  1. Share your knowledge! Your experiences may help to prevent suffering in others.
  2. Chronic pelvic pain is a multi-disciplinary and multi-organ problem requiring multiple approaches to treat.
  3. Listen to your body and mind. Be gentle, loving, and compassionate to yourself. Live mindfully and stay connected with yourself and loved ones .
  4. Practice self-care techniques every day.
  5. Healing takes time - be patient with yourself.
  6. Physical therapy is a critical element towards healing pelvic pain.
  7. Flare-ups are common, but keep observing, and make small changes in your daily routine or in treatment to see what helps.
  8. Ignore ignorance! Do not allow the opinions of others to affect how you view yourself. Your pain is real, even if others don’t understand it.
  9. Watch your children carefully. Prevention of chronic pelvic, genital, and sexual pain disorders is possible through education and early detection.
  10. THERE IS HOPE! Chronic pain research has exploded and improvements in care will continue.

In addition, ICA was directed to two websites that may prove helpful to IC patients. The first, 2date4love, is a dating site for people who cannot engage in sexual intercourse, yet would like to experience love, intimacy, and companionship. The second, Sex Smart Films, the “Netflix of Sex Education,” is dedicated to promoting sexual literacy, and can be particularly useful for those who are unable to have intercourse.

National Women’s Health Week
5/15/2014

The Office on Women’s Health, part of the U.S. Department of Health & Human Services, invites you to join in celebrating National Women’s Health Week, May 11-17, 2014. The goal is to empower women to make their health a priority. National Women's Health Week also serves as a time to help women understand what it means to be well. 

ICA Online Support Community
5/15/2014

Do you feel like no one understands what it’s like to have IC? You are not alone. With a growing number of members, ICA’s Online Support Community is a great place of peace, hope, advice, and comfort for patients, family members, friends, and healthcare professionals looking for ways to better understand the impact of interstitial cystitis (IC). We invite you to join us in the online support community, where you can connect with hundreds of other people experiencing similar symptoms, situations, and emotions.

ICA @ AUA
5/15/2014

Next week ICA will be attending and advocating at the American Urological Association (AUA) Annual Meeting in Orlando, FL. The AUA Annual Meeting is the largest gathering of urologists in the world and provides unparalleled access to groundbreaking research, new guidelines and the latest advances in urologic medicine. 

ICA in NYC
5/15/2014

ICA will also be attending the Alliance for Pelvic Pain retreat in New York City at the end of May. This retreat was created for chronic pelvic pain patients with complex symptoms, including Interstitial Cystitis (IC) and other pelvic and genital pain disorders. The goal of the retreat is to expand knowledge and care to the underserved population of people with chronic pelvic pain. 

Welcome, Dr. Robert Echenberg!
5/9/2014

Please join us in welcoming Dr. Robert Echenberg to the ICA Medical Advisory Board. Dr. Echenberg has decades of experience assessing, diagnosing and treating chronic pelvic, genital and sexual pain disorders. ICA is very excited by what Dr. Echenberg brings to the Medical Advisory Board, and we look forward to working with him to improve the quality of healthcare and lives of people living with interstitial cystitis.

Chronic Pain Patient Survey
5/8/2014

Washington University School of Medicine in Saint Louis, MO is conducting a survey of patients with chronic pain. The investigators would like feeback from 30 patients with interstitial cystitis on their current treatment. The findings of this research may be used for more patient-driven, evidence-based, decision making with the goal of improving patients’ outcomes and satisfaction with chronic pain treatment. Anyone with chronic pain lasting longer than three months can participate. If you would like to contribute, please contact the ICA. The first 30 people to respond will be passed along to the research team at Washington University School of Medicine.

ICA Online Support Community
5/1/2014

Now, with a growing number of participants, ICA’s Online Support Community is a great place of peace, hope, advice, and comfort for patients, family members, friends, and healthcare professionals looking for ways to better understand the impact of interstitial cystitis (IC). Forums where topics like "Living with IC," "IC Diet," and "Management of IC Pain" are frequently discussed, and new discussions are added daily. We invite you to join us in the online support community, where you can connect with hundreds of other people experiencing similar symptoms, situations, experiences, and emotions. Sign up today!

Pelvic Floor Dysfunction Featured on The Dr. Oz Show
5/1/2014

ICA is excited to announce a very special guest on the April 29 episode of The Dr. Oz Show - our friend, physical therapist Amy Stein, who specializes in treating pelvic floor dysfunction. She addressed pelvic floor dysfunction symptoms and causes, as well as stretches that can be done at home as treatment. Amy Stein also recently released a DVD called, Healing Pelvic and Abdominal Pain: the ultimate home program for patients and a guide for practitioners, which can be purchase on Amazon here. When purchasing through this link, a portion of every sale is donated to ICA.

IC Mentioned in Health Magazine
5/1/2014

The May issue of Health magazine contains a short article that discusses a range of different urinary tract issues, including IC. ICA hopes discussion of IC in a publication with such large readership will help raise awareness of IC. 

Free Webinar - IC Diet: Friendly Fats
5/1/2014

Tired of hearing about all the things you should not eat? The good news is that recent research has shown that some fats – which are usually all lumped into one group and marked “off limits” need to be reconsidered. It turns out that the essential omega 3 fatty acids may help us feel better and should be increased in our daily diets. Sessions from ICA’s 2013 Patient Forum were recorded and are available for viewing free-of-charge, including this one on IC diet featuring Barbara Shorter, EdD, RD, CDN, Long Island University, Brookville, NY. In this webinar, you’ll learn about the anti-inflammatory properties of the fats in fish, walnuts,canola oil, olive oils, and many other delicious foods, and the hopes for their role in mitigating chronic pain.

Be sure to check ICA’s Facebook page this weekend for IC-friendly recipes. Do you have a great recipe that is IC friendly? If so, please share it with ICA.

Survey Closes on May 7 @ 12:00pm
5/1/2014

Respect, openness, and honesty are key components of any healthy relationship. ICA would like to know about your relationship with your healthcare provider. What do you feel makes for a great relationship with your physician? Please let us know by May 7 by taking our Healthcare Provider Relationship survey. The results will be published in the Summer 2014 ICA Update, which will be a special issue written specifically for healthcare providers.

Response to Dr. Drew Pinsky
5/1/2014

On a recent podcast, Dr. Drew made some extremely insensitive comments about endometriosis and IC. He subsequently apologized on a later show and promised to do a separate podcast devoted to endometriosis. ICA is offended and disappointed by Dr. Drew’s comments and has requested that he also produce a podcast on IC. We hope he will turn this into a positive awareness and education opportunity for greatly misunderstood and life altering conditions.

ABC News National Tweet Chat on Pain Management
4/21/2014

Join the ABC News National Tweet Chat on Pain Management on Tuesday, April 22 at 1 p.m. Eastern. They will be discussing a range of topics including chronic pain and palliative care. You can join the conversation and get into the chat in three easy steps: http://abcnews.go.com/Health/Wellness/dr-bessers-live-twitter-chat-join/story?id=18343653

New Additions to ICA Reading List
4/17/2014

Think you’ve seen and read every video and book about IC? Not so fast! There are two new releases on ICA’s Reading List you’ll want to check out:

Amy Stein, DPT, BCB-PMD, Healing Pelvic and Abdominal Pain: the ultimate home program for patients and a guide for practitioners.

Mary Ruth Velicki, MS, DPT, Healing Through Chronic Pain, A Physical Therapist’s Personal Journey of Body, Mind, Spirit Transformation.

Note: A portion of the Amazon sales made through ICA’s Reading List support ICA’s work in research, education, and patient advocacy.

Do you have a good resource you don’t see on ICA’s reading list that you can recommend? Let us know and we’ll review it for a possible addition. Your contributions to the IC community are appreciated! 

IC Support Group Season is Ramping Up Again!
4/10/2014

Do you live in northwestern Illinois? Are you looking to meet, face-to-face with other IC patients? If so, consider attending the NW Suburban Illinois IC Support Group hosted by ICA’s Board of Directors Co-Chair, Barbara Zarnikow. The group will meet on Monday, April 14, 2014. There will be two guest speakers: The National Institute of Diabetes and Digestive and Kidney Diseases's (NIDDK) Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Researchers, Dr. David Klumpp and Dr. James Griffith. Email bzarnikow@aol.com for more information.

ICA is excited to announce the creation of a new support group in northern Vermont (Burlington area). Email Diana Dunn (dianaddunn@gmail.com) for more information.

If there aren’t any IC support groups in your area, be sure to check out ICA’s online support community.

ICA Patient Forum Sessions Webinars Still Available
4/10/2014

Be sure to view the recorded sessions from ICA’s 2013 Patient Forum. Listen to many prominent experts in the field of IC research and treatment in these sessions, called “truly empowering” by those who attended the live event. Gain a wealth of information from these free resources.

ICHope Self-Management Module
4/10/2014

In March, ICA launched the new and interactive program, ICHope Self-Management Module, created uniquely for IC patients. With this free online program – the first of its kind – patients can learn to better manage their IC pain. To use ICHope, visit www.ichelp.org/ichope.

Let Us Know What You Think
4/10/2014

ICA is interested in knowing where you get information about IC and its related conditions so we can provide the IC community with the best information available. You can help ICA by joining the hundreds of others who have already taken the short survey.

Don’t Tell Me What I Can’t Do
4/10/2014

There are so many reasons to feel hopeful. Read the newest personal Voices of Hope story. Everyone has a story. Please share yours with others. You never know who you might help.

“Hope is a good thing, maybe the best of things, and no good thing ever dies.” ― The Shawshank Redemption
Drug Disposal Event
4/10/2014

The common behavior of flushing old or expired medications down the drain is dangerous and bad for the environment. Dispose of unused or expired medications properly on Saturday, April 26 from 10 a.m. until 2 p.m. Visit www.dea.gov, or call 800-882-9539 for more details.

ICA Billboard Scavenger Hunt
4/10/2014

Have you seen an ICA billboard in your city? There are now nearly 1,000 all around the country. Check out the Get the Facts page to find the IC billboards nearest you. Send us your photos and join our efforts to help spread the knowledge about IC through your social media channels.

ICA in the News
4/4/2014

ICA has made many appearances in the media recently. Lee Bryan Claassen, CAE, ICA’s Executive Director, had an article published online on Mediaplanet’s cross-platform Women's Pelvic Health Campaign. In addition to online, Ms. Claassen’s article was also featured as part of a 12-page print publication within the LA Times on Saturday March 29th. Combined, it is hoped that this will reach as many as 3 million readers! ICA has caught the attention of Prevention magazine, where ICA’s website is mentioned as a resource in the April issue. The Sjögren’s Syndrome Foundation also published a piece on IC and ICA in the March 2014 issue of their newsletter.

ICA Annual Capitol Hill Visit
3/20/2014

Members of the ICA Board of Directors, ICA staff, and IC patient advocates brought the voice of the more than 12 million men, women, and children with IC to Capitol Hill on March 11. Nearly 30 Congressional offices representing 9 states were educated about the needs of IC patients everywhere and were asked to support the following in the fiscal year 2015 budget:

  • Overall funding for the National Institutes of Health (NIH) at a level of $32 billion and invest in basic science, disease pathology, and clinical trials on IC.
  • Maintain the Centers for Disease Control and Prevention (CDC) IC Education and Awareness Program.
  • Include IC on the list of eligible conditions for study in the Department of Defense (DOD) Peer-Reviewed Medical Research Program in the Defense Appropriations Bill.

Join us in our efforts and check out the ICA advocacy toolkit for everything you need to know on how to become an IC advocate.

New Leaders Added to ICA Board of Directors
3/20/2014

The Interstitial Cystitis Association is pleased to announce three new additions to its Board of Directors who will lead, advise, and support the activities of ICA for a three-year term:

Jann KeenanJann Keenan, EdS is a health literacy specialist and active community volunteer. Since 1995, she has served as President of the Keenan Group, Inc., a social marketing and multi-media design firm. Jann is also a strategic partner with the Institute for Healthcare Advancement. To promote health equity, Jann develops culturally relevant educational materials and curricula. She helps agencies adopt policies to create system-wide change as they work toward becoming health literate organizations. She received her EdS degree in instructional design from Indiana University, Bloomington, IN. An IC patient, Jann and her family call Maryland home.

Rick LufkinRick Lufkin is a serial entrepreneur in the life sciences specializing in early stage pharmaceutical, biotechnology, and medical device companies. He currently serves as CFO and director of a firm exploring and advancing real-time protein identification. As president of a specialty pharmaceutical company, he was involved with the early drug approval process for Elmiron® working closely with IC patients, physicians, and regulatory authorities. Rick is an MIT graduate with an MBA from the Wharton School, University of Pennsylvania. He and his wife live in New Jersey.

Joy SelakJoy H. Selak, PhD, became too ill to work after being diagnosed with interstitial cystitis and other autoimmune and neurological conditions at 40. She found effective, supportive care and asked her physician to co-author a book with her about their shared experience. You Don’t LOOK Sick!: Living Well with Invisible Chronic Illness is now its second edition. In 2010, Joy underwent a successful surgery and began to regain her health. After 20 years of illness, she is now working for an arts education non-profit and is committed to helping others build meaningful lives with long term illness.

More Cities with IC Billboards
3/19/2014

New IC billboards have recently been posted in CA, KY, LA, NJ, and NM. Check out the Get the Facts page to find the IC billboards nearest you. Please join our efforts and help spread the knowledge about IC through your social media channels.

ICHope – Your Tool for Managing IC Pain
3/18/2014

ICA is excited to announce the release of our newest complimentary online program, ICHope Self-Management Module. This free interactive program – the first of its kind – is designed to help IC patients learn to better manage their IC pain by adopting healthy, positive behaviors to prevent or minimize pain and to cope with pain that does occur. In addition, it shows patients how to implement these strategies — at their own pace, when they are ready — to help manage pain from IC. ICHope was created uniquely for IC patients, who, along with ICA staff and experts in the community, were integral in the development of this program. Are you ready to manage your pain? To get started, visit www.ichelp.org/ichope and learn more about ICHope.

New ICA Online Support Community – Sign Up Today
3/5/2014

Interstitial Cystitis Association Support CommunityThe Interstitial Cystitis Association (ICA) is very excited to announce the launch of our new Online Support Community. ICA’s Online Support Community is a place of peace, hope, and advice providing comfort for patients, family members, friends, and healthcare professionals looking for ways to better understand the impact of IC. It will provide strength in numbers for those living with IC. ICA’s Online Support Community is a secure, peer-to-peer, moderated forum where topics like "Living with IC," "IC Diet," and "Management of IC Pain" are frequently discussed. We invite you to join us in the community, where you can be connected to hundreds of other people experiencing similar symptoms, situations, experiences, and emotions.

Read More

ICA Restructures Membership Program
3/4/2014

ICA has restructured its membership program to give you more benefits and a greater variety of support options. As a $50 Supporter, you’ll be kept abreast of the latest IC research, news, and ICA announcements. You’ll also receive online access to ICA brochures and fact sheets, a downloadable restroom access card for printing, and online access to the two most recent issues of ICA Update. As a $100 Advocate, you’ll get all that plus online access to ALL past issues of ICA Update. Go to www.ichelp.org/donate to learn more.

ICA Launches “Get the Facts” Awareness Campaign
3/4/2014

Urgency… frequency… bladder pain… You know the symptoms of interstitial cystitis (IC), but unfortunately many men and women suffering with these symptoms do not. This is why the Interstitial Cystitis Association (ICA) is in the process of launching IC awareness billboards across the nation! Spreading IC awareness means fewer men and women will go undiagnosed and untreated—suffering with IC symptoms alone.

So get your cameras ready! Nearly 1,000 of these billboards will be released and we want your photos of the IC billboards in your city or town! Have you seen one in your neighborhood yet? Send us your photos to icamail@ichelp.org or share them on the ICA Facebook page. Stay tuned for more information regarding the locations of the billboards and how you can help us spread IC awareness. Together, we can make a difference.

ICA’s “Truly Empowering” Patient Forum Sessions Still Available
3/4/2014

The “truly empowering” sessions from ICA’s Patient Forum are still available for viewing on demand in the Patient Forum section of the ICA website. They are also available, along with many other audio and video resources, in our Virtual Patient Education section.

ICA Attends Second Annual Meeting of PAINS
2/13/2014

ICA Executive Director, Lee Claassen attended the Second Annual Meeting of the Pain Action Alliance to Implement a National Strategy (PAINS) held January 26 – 28 in Washington, DC. PAINS is a consortium of leaders working in professional societies, patient advocacy organizations, policy groups, consumers, payers, and the private sector working together toward a common vision and mission to transform the way pain is perceived, judged, and treated. With 100 million Americans living with chronic pain (more than those with diabetes, heart disease, and cancer combined), PAINS’ primary goal is to establish chronic pain as a public health priority. The meeting gathered more than 90 leaders from the U.S. Department of Health and Human Services (HHS), other policy makers, funders, and other key stakeholders to review and discuss the state of pain, the importance of a public health approach, promising innovations/projects, and what it will take to establish chronic pain as a major public health issue. For more information visit www.painsproject.org.

ICA Represented at Urology Policy Forum Strategic Planning Meeting
2/13/2014

On January 30, Lee Claassen, ICA Executive Director represented ICA at the Urology Policy Forum Strategic Planning Meeting in Washington, DC. The Urology Policy Forum is a coalition of professional societies, patient advocacy organizations, and industry working collaboratively on policy issues of mutual interest and concern, including federal funding for research. At the invitation of ICA, Dr. Robert Star, Director of the Division of Kidney, Urologic, and Hemotologic Diseases at NIDDK addressed the group. Dr. Star provided an overview of the urology research led by his division which provides the foundation for the development of new therapies and treatments that lead to better health outcomes for patients.

The Health Insurance Marketplace: Know Your Rights
1/15/2014

You have certain rights when you enroll in a health plan in the Marketplace. These rights include:

  • Getting easy-to-understand information about what your plan covers, what services cost you out-of-pocket, what drugs it covers, and what providers are in its network
  • Getting coverage for emergency services
  • Getting coverage for a prescription drug that’s not normally covered by your plan
  • Appealing a health plan’s decision not to pay a claim

Read More

ICA Holiday Schedule
12/20/2013

ICA’s office will be closed for the holidays starting December 21, 2013 and will reopen on January 2, 2014. Our website, www.ichelp.org, has many resources to assist you during this time. You can email us at icamail@ichelp.org and an ICA staff member will reply to your message within two to three business days. You can also find support on the ICA’s Facebook page http://www.facebook.com/InterstitialCystitisAssociation.

Surviving the Holidays with IC
12/12/2013

Surviving the holidays stress-free (or with as little stress as possible) can be difficult for anyone. However, keeping stock of your stress is even more important when you have a chronic condition like IC. In fact, stress is the second most common trigger of IC flares, second only to diet. ICA has compiled some important tips to help those with IC get through the holiday season as stress-free and pain-free as possible.

Read More

Matching Challenge Grant Increased
11/25/2013

Meet the Challenge and Double Your Impact
Challenge Amount Increased

Thanks to your generous support, we have been successful in meeting the challenge and our generous donor has has raised the matching grant amount to $75,000! With this unique opportunity, every contribution to the ICA Pilot Research Program up to $10,000 per individual or organization will be matched by our donor.

Help ICA meet this challenge and double your support.

Share this matching opportunity on Facebook, Twitter, and Pinterest. Or print out the flyer and hand it to your colleagues, friends, and family.

Read more about the matching challenge grant.

Support the Cause While Shopping at Amazon
11/25/2013

Will you be purchasing gifts from Amazon this holiday season? If so, you can support the cause while shopping! Amazon donates a percentage of sales to the ICA if you click through this special link to Amazon.

ICA at AUGS and IPPS Annual Meetings
10/25/2013

Last week, the Interstitial Cystitis Association (ICA) attended the International Pelvic Pain Society (IPPS) Annual Scientific Meeting in Orlando, Florida. The meeting provided attendees with a detailed overview on the evaluation and management of chronic pelvic pain disorders. Attendees included physical therapists, gynecologists, urologists, nurse practitioners, surgeons, psychologists, and researchers.

The ICA team also attended another meeting last week— the  (AUGS) 34th Annual Scientific Meeting in Las Vegas, Nevada . The meeting was designed to show the latest advancements, research, and technologies in urogynecology—a sub-specialty of urology and gynecology and a growing part of the IC healthcare team.

At both meetings, ICA sought to bring IC awareness and education to the multidisciplinary groups. And, we were successful!

Read More

The Doctors TV Show Features IC
10/25/2013

On Monday, October 14, The Doctors TV show featured Elizabeth Bingenheimer, a mother of two with IC. Elizabeth’s feature was the result of months of emailing celebrities, TV shows, and news shows asking them to help raise IC awareness.

Read More

New Online Program Helps IC Patients Manage Pain
10/2/2013

ICHope Self Management Module
A Staged Approach to Managing IC Pain

ICA understands how difficult it can be to manage IC pain—whether it is severe or mild pain or pain that comes and goes. This is why ICA is excited to announce the release of ICHope Self-Management Module. In partnership with Pro-Change Behavior Systems, Inc., ICA has developed this complimentary, personalized online program designed to help people diagnosed with IC manage their pain. ICHope is based on the science of behavior change, which asserts that people go through a series of stages in the process of changing their behavior. IC patients can use ICHope to assess which stage of change they are in and then receive stage-matched strategies to help them adopt positive behaviors to prevent or minimize pain and to cope with pain that does occur.

“As a patient, I know just how invasive IC pain is—often affecting every aspect of an IC patient’s life,” says ICA Board Co-Chair and ICHope consultant, Barbara Zarnikow. “Enabling patients with the tools they need to take charge of their pain not only improves their health, it allows them to regain control in their life. I think I speak for every patient when I say how truly exciting this one-of-a-kind program is for those experiencing IC pain.”

Read More

FDA’s Latest Ruling on Opioids Good for Chronic Pain
9/19/2013

The role of opioids in treating chronic pain conditions like interstitial cystitis (IC) has been an increasingly common subject of public discussion over the past few years. The Food and Drug Administration (FDA) and other policymakers have been trying to find a balance between decreasing opioid drug abuse and misuse, while allowing appropriate access to these pain-relieving drugs.

Read More

Your Support Makes a Difference
9/19/2013

Last week, we announced that a donor has presented ICA with a $50,000 matching challenge grant. With this unique opportunity, every contribution to the ICA Pilot Research Program up to $10,000 per individual or organization will be matched. Read just how your generous donations make a difference!

IC researcher Michael Chancellor, MD, Beaumont Hospital, received an ICA Pilot Research Grant a few years back to study how very tiny bubbles of fat can transport pain medication into the bladder. Theses bubbles of fat, known as liposomes, allow the bladder to be coated with a concentrated amount of medication that reduces the extreme bladder pain associated with IC.

As a result of his initial ICA-funded research project, Dr. Chancellor received a $1.6 million research award through the Department of Defense Peer Reviewed Medical Research Program to further study his novel drug delivery system. Dr. Chancellor has explained that he will soon be able to rapidly progress the liposome-based therapy toward a US Food and Drug Administration clinical trial.

Dr. Michael Chancellor is a wonderful example of the importance of the ICA Pilot Research Program. Many ICA-funded research projects go on to receive larger funding from federal agencies. Thanks to this funding, IC researchers are able to advance the understanding of IC and pursue studies to find better diagnostic and treatment options for IC.

We hope you will continue to support the ICA Pilot Research Program, as IC researchers face many challenges in receiving the initial funds to study IC. Please support the future of IC research today. Every dollar you contribute will be matched—doubling the impact of your donation.

ICA—Voice of the Millions with IC
9/19/2013

In the September 2013 issue of Elle magazine, one of ICA’s favorite experts, Amy Stein, MPT, was interviewed on the benefits of pelvic floor physical therapy for the article Let Who Put What Where (available in print only). We congratulate Stein for bringing awareness to this form of treatment and encourage you to read Amy’s interview with Elle.
Read More

Find an IC Healthcare Provider in Just a Few Clicks
9/5/2013

When you have interstitial cystitis (IC), finding the right healthcare provider is key to the successful management of your condition. The free Interstitial Cystitis Association (ICA) Healthcare Provider Registry, now online, is a great way to begin your search. Containing over 1000 healthcare providers, including physicians, nurse practitioners, physical therapists, dietitians, and counselors, the Registry will provide you with the information you need to build your IC healthcare team—in just a few clicks!

To get started, you will need to register or login to the ICA website. It is free to register and will take less than 5 minutes to complete.

Look for more free online tools to roll out on the ICA website in the coming weeks. To continue providing these helpful tools to you at no cost, your generous support is needed. Consider donating to the ICA Annual Fund. Your gift will make a difference!

Meet the Challenge and Double Your Impact
9/5/2013

The Interstitial Cystitis Association (ICA) is excited to announce that a generous donor has presented ICA with a $50,000 matching challenge grant. With this unique opportunity, every contribution to the ICA Pilot Research Program up to $10,000 per individual or organization will be matched by our donor.


Help ICA meet this challenge and double your support.


Share this matching opportunity on Facebook, Twitter, and Pinterest. Or print out the flyer and hand it to your colleagues, friends, and family.

Read more about the matching challenge grant.

More IC Research Funded by ICA
8/22/2013

Funding awarded through the ICA Pilot Research Program provides researchers with grant monies needed to get their projects literally “off the ground.” And without research, there is no hope for finding answers to what causes or may cure IC. ICA is proud to announce the preliminary findings of two studies recently funded by the program.
Read More

IC Research Funding Available for Nurse Practitioners
8/22/2013

The Interstitial Cystitis Association (ICA) often partners with other organizations to fund IC research. These partnerships ensure that the entire IC medical community has an opportunity to participate in research as it’s not only urologists who manage and treat IC. Through collaboration with the American Urogynecological Society (AUGS), ICA recently awarded urogynecologist Dr. Melinda Abernethy from Northwestern University $10,000 for her clinical research project on the biology of irritative bladder symptoms.

This year, ICA is pleased to announce another joint research grant, this time with the American Nurse Practitioner Foundation (ANPF). One (1) $10,000 grant will be awarded to a nurse practitioner interested in the following research topics:

  • Advancing the understanding about the underlying mechanisms, optimal treatments and clinical practice models, and epidemiology of IC.
  • Research involving treatment clinical practice models across the multidisciplinary IC treatment team is encouraged.

The application submission deadline is September 26, 2013. For more information on eligibility and how to apply, visit the ANPF’s website.

Not a nurse practitioner? Please share this information with the nurse practitioners in your IC healthcare team.

Help Us Spread FREE IC Education in the Medical Community
8/22/2013
Patients should also take advantage of this complimentary educational program! Read the CME monograph and view the CME podcasts to learn more about managing IC.

Check out the latest in IC medical education! Conquering IC: Identification and Management Strategies is a continuing medical education (CME) program developed by ICA in partnership with the American Urogynecologic Society (AUGS) and in cooperation with The France Foundation and the Nurse Practitioner Alternatives. This innovative, online educational program, located on www.ichelpcme.org, provides an interdisciplinary audience with comprehensive continuing education on identification and management of IC patients; both the course and CME credit are free of charge to participants. “We’re extremely excited to be able to offer such a concise and convenient IC education program for healthcare providers,” says ICA’s Executive Director, Lee Bryan Claassen, CAE.

Why is this program so important? "It is critical that healthcare providers diagnose IC at the earliest possible stage to help limit the suffering that IC patients have,” explained Jeffrey Proctor, MD Chair of the CME, who is also an ICA Medical Advisory Board member. “This CME will help educate healthcare providers on the signs and symptoms of IC, so they can confidently recognize and treat IC patients."

One of the biggest complaints we hear from newly diagnosed IC patients is that they cannot find a knowledgeable healthcare provider to help them manage their symptoms. Many patients are still told that IC is “all in their head.” Educational programs like this CME help to spread IC education and awareness in the medical community; however, we need your help getting the word out. Be an advocate and share Conquering IC: Identification and Management Strategies (now accessible on mobile devices) with the medical providers in your IC healthcare team.

Have an IC Question?
8/22/2013

Have an IC Question? Why not look through ICA’s growing list of Frequently Asked Questions? ICA staff and volunteers reach out to IC experts to answer questions from patients, healthcare providers, researchers and the public. Also, many of the questions have been answered in the various educational programs ICA has developed. Check out some of the most commonly asked questions about IC. This is a free service ICA provides and is only made possible through your support.

ICA Recruiting Volunteers for Board of Directors
7/30/2013

Apply by August 16, 2013

The Interstitial Cystitis Association (ICA) is recruiting knowledgeable, engaged, and inspired volunteers to lead, advise, and support the activities of ICA by serving on its Board of Directorsfor a three-year term. The Board meets four times annually of which three meetings are conducted by teleconference and one meeting is conducted in-person/face-to-face.

Read More

IC Featured in “To Your Good Health”
7/30/2013

On Saturday July 27th, author and practicing internist Dr. Keith Roach featured IC in his medical advice column, “To Your Good Health.” The column, syndicated in over 150 newspapers around the country, featured the story of a woman who manages her IC with bladder instillation, Elmiron (pentosan polysulfate sodium), and Interstim (neuromodulation). Dr. Roach thanked the patient for sharing her experience with IC and mentioned the ICA as a “great resource for those with [IC].”

ICA would like to thank Dr. Roach for addressing IC in his column and spreading IC awareness. The more people know what is causing their urinary urgency and frequency and bladder pain, the less they will go undiagnosed and untreated, and potentially suffering with IC symptoms alone. Join us in thanking Dr. Keith by visiting his Facebook page. Tell him ICA sent you!

ICA Honors Volunteers
7/25/2013

Beth Getz

The ICA has been fortunate to have many wonderful volunteers over the years. We would like to pay tribute to two who are no longer with us. Their contributions to the IC community will never be forgotten. We are grateful for their support and the continued support of their families.

Both of these women shared their stories in ICA's book The Many Faces of IC, Vol. I. Read more about the legacy these women have left behind.

You can honor the lives of Betty, Beth, and others in the IC community who have passed away by making a memorial donation. Memorial donations to the ICA give hope to the millions of people with IC and their families by providing funding for IC research, advocacy, and education programs.

If you know of an IC patient who has passed away and would like to add their story to the ICA memorial page, please send it to icamail@ichelp.org.

“Some people come into our lives and quickly go. Some stay for a while, leave footprints on our hearts, and we are never, ever the same.” ― Flavia Weedn

Men – We Want to Hear From You
7/18/2013

For the next issue of the ICA Update, we would like to feature males in the IC community. If you are a man with IC, or a male caregiver (including husband, boyfriend, father, son, brother, cousin, nephew, friend) of an IC patient and are interested in being interviewed and featured in the next issue, we’d like to hear from you. Please email aroach@ichelp.org with a brief summary (500 words or less) of your experience as a caregiver or patient. In the email, also include your full name, phone number, and the best time of day to reach you.

We look forward to hearing from you!

ICA Forum Named “Truly Empowering” By Attendees
7/18/2013

The Interstitial Cystitis Association (ICA) hosted the 2013 Patient Forum in Philadelphia on Saturday, June 29th. This educational event empowered patients and caregivers with the need-to-know tools for successful management and treatment of interstitial cystitis (IC). The Forum was a tremendous gathering of over 125 patients, caregivers, family members, healthcare providers, IC researchers, pharmaceutical representatives, and those with an interest in IC, united by the mission to empower IC patients with knowledge and hope.

Read More

12,000 for 12 Million
6/21/2013

ICA FacebookBack in 2009, the Interstitial Cystitis Association launched the ICA Facebook Page—an online community where patients can get support and discuss the challenges of living with bladder pain, urgency and frequency. Over the years, it has also been one of several ways ICA communicates with IC patients and caregivers. Thank you for helping our community reach 12,000+ “Likes,” which is representative of the 12 million+ Americans who live with IC. Help us to continue to spread IC awareness online by sharing the community with your friends and family.

New ICA Educational Program for Healthcare Providers
6/14/2013

In partnership with the American Urogynecologic Society (AUGS) and The France Foundation (TFF), the Interstitial Cystitis Association (ICA) has released its newest continuing medical education (CME) program, Conquering IC: Identification and Management Strategies. Located on www.ichelpcme.org, this educational program provides an interdisciplinary audience with comprehensive continuing education on identification and management of patients with IC – a chronic bladder condition that usually consists of recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, and urinary frequency and urgency.

Educational opportunities like the ICA CME teach healthcare providers about the most current approaches in the diagnosis, treatment, and management of IC, which may translate into better symptom control and improved outcomes for patients with IC.
Read More

ICA Back on the Hill
6/14/2013

June 4—ICA Board Co-chairs Eric and Barb Zarnikow, ICA Board Members Neal Thompson and Tony Tyler, ICA Executive Director Lee Claassen, ICA staff and other IC advocates travelled to Capitol Hill to educate Congress about the needs of the more than 12 million men, woman, and children with IC.
Read More

Celebrate National Men’s Health Week
6/14/2013

Men get IC, too! In fact, new studies have shown as many as 2 to 4 million American men may have IC. National Men’s Health Week, June 10-16, which ends with Father’s Day, is a wonderful time to focus on how men with IC can take care of their health for themselves and for the well-being of their families. If you are a man with IC, take a look at the wonderful resources we have for you:

Not a man with IC? Be sure to share these resources with the IC man in your life.

The ICA is planning to add even more resources for men and IC in the near future. Until then, be sure to take a look at the other resources we have that are helpful to both men and women with IC, including IC diet information, IC treatment guidelines, IC reading lists, and more!

Be Your Own Best Advocate
5/23/2013

Join the Interstitial Cystitis Association (ICA) in ensuring optimal care with dignity for all those affected by interstitial cystitis (IC) by becoming your own best advocate. Policy makers want to hear from you! Two recently launched websites can help you make your voice heard.

The Food and Drug Administration (FDA) Patient Network website welcomes the unique perspective of patients, family members, caregivers, and patient advocates directly affected by conditions such as IC to assist with the Agency’s decision-making processes. The site also educates patients and caregivers on the drug and device approval process, clinical trials, investigational drugs, promising treatment options, off-label drugs, and new FDA approvals — all written in plain language.

The State Pain Policy Advocacy Network (SPPAN) website educates patients with up-to-date information about pain management-related policies and provides the tools and resources needed to engage state-level officials on the topic of chronic pain.

Please let us know if you want more information on participating in IC advocacy efforts.

ICA at the Alliance for Pelvic Pain Retreat
5/17/2013

The Interstitial Cystitis Association (ICA) recently attended the Alliance for Pelvic Pain’s two-day educational patient retreat featuring Robert J. Echenberg, MD, FACOG, Deborah Coady, MD, FACOG, Amy Stein, MPT, BCB-PMD, Nancy Fish, MSW, MPH, and Alexandra Milspaw, MEd, LPC. The specialists combined expert knowledge to provide attendees with the necessary tools to successfully manage chronic pelvic pain (CPP).
Read More

Celebrate National Women’s Health Week
5/17/2013

It’s time, again! ICA Celebrates National Women's Health Week.

Why would a woman with IC want to celebrate National Women’s Health Week? Well, 3 to 8 million women in the United States may have IC. Women are often the caregivers for their loved ones, putting the needs of their spouses, partners, children, and parents before their own. Because IC is a chronic illness, self-care is very important. This week serves as a reminder to put your health first!

Get more information on screening tests for women, choosing healthier foods to eat, how to quit smoking, and more from the National Women’s Health Week team.

ICA Patient Forum Registration Now Open
5/8/2013

Empowering IC Patients with Knowledge and Hope

Interstitial Cystitis Association (ICA) invites you to attend the 2013 Patient Forum: Empowering IC Patients with Knowledge and Hope on Saturday, June 29, 2013 starting at 7:15AM at the Loews Philadelphia Hotel. Located in the heart of historic Philadelphia, this complimentary ICA Forum will empower patients and caregivers with the need-to-know tools for successful management and treatment of IC. Experts in IC will present the latest information on physical therapy, research, intimacy, opioids, diet, and integrative medicine. The Forum will close with the ground-breaking session, When Treatment Options Fail—a must see for anyone frustrated with standard IC treatments.

Or you can register to watch the live event from the comfort of your own home. We will be broadcasting live!

Read More

Next Stop – American Urological Association Annual Meeting!
5/3/2013

Interstitial Cystitis Association (ICA) representatives have been on the road for the past few weeks! The ICA has recently attended back-to-back meetings hosted by the US Pain Foundation and the Alliance for Pelvic Pain in order to spread interstitial cystitis (IC) awareness to the general public and education to patients that suffer with interstitial cystitis and overlapping conditions. Next stop—the American Urological Association (AUA) Annual Meeting in San Diego, CA. This meeting brings together international experts to discuss the latest discoveries and advances in urology and translate these findings into clinical practice. Throughout this week-long event, ICA will be reporting from the floor of the meeting, updating patients, healthcare providers, and others who are unable to attend the meeting about the latest in IC. ICA will also be unveiling its newest continuing medical education (CME) tool, Conquering IC: Identification and management Strategies. Tell your IC healthcare provider to stop by ICA’s booth, # 5053, for more information!

Throughout the meeting, ICA will keep you posted on breaking news in IC through the ICA Facebook and Twitter communities. Next week, look out for full reports on both the AUA meeting and the Alliance for Pelvic Pain Patient Retreat.

ICA Attends a Patient Summit on Pain
4/26/2013

On Sunday, April 21, Interstitial Cystitis Association (ICA) representatives attended A Patient and Family Day to Learn about Managing Pain summit co-hosted by US Pain foundation and The New York Pain Society. About 100 chronic pain patients with conditions such as chronic migraine, fibromyalgia, and interstitial cystitis (IC) were in attendance to learn about a variety of topics in chronic pain management. Below are some of the highlights from this educational summit held in White Plains, NY.

Opioids—Good for Some but Not All

Charles E. Argoff, Professor of Neurology at Albany Medical College and Director of the Comprehensive Pain Center at Albany Medical Center in New York, opened the summit with a session on the use of opioids in chronic pain management. Dr. Argoff stressed that it is important for patients and healthcare providers to work as a team when it comes to pain management. Clinicians need to be educated on the use of opioids for chronic pain. They also must thoroughly assess their patients, since not every pain patients is a good candidate for opioids. Assessment should include:

  • Diagnosis of pain (above and beyond the typical pain scale)
  • Identification and treatment of the causes of pain
  • Identification and treatment of co-morbid conditions
  • History of substance use (including tobacco) and abuse

For optimal pain management, chronic pain patients must have an open dialogue with their healthcare provider. They need to share their complete medical and prescription history. It is also important that patients trust and are honest with their healthcare provider.

What if opioids do not relieve a patient’s pain? There are several steps that can be taken to improve pain relief with the use of opioids, explains Dr. Argoff. There are many different categories of opioids. Healthcare providers may need to adjust the type of opioid their patient is using. Dosage is another factor that may need to be adjusted if a patient’s pain persists. Patients may likely need to take other medications, in conjunction with opioids, to maximize pain relief.

Lastly, if a patient is still not experiencing pain relief, or if they are experiencing side effects that cannot be managed, patients and their healthcare provider must plan for an opioid “exit strategy.” This strategy includes using alternatives to opioids for pain management.

A Holistic Approach to Pain Management

As with opioid pain management, holistic pain management begins with a good partnership between patients and their team of healthcare providers, explains Andrea Wolkenber, PT, MA, Founder and President of Spine Solvers Inc., New York, NY. Wolkenber explains that patients are complex whole beings that need to factor the mind, body, and spirit when treating pain. Holistic approaches to pain management include:

  • Mind-body medicine approaches that focus on how the mind and body interacts (Art therapy, music therapy, guided imagery, hypnosis, mindfulness meditation, exercise, etc.)
  • Energy medicine approaches that adhere to the concept that all people have subtle energy fields within them that they emit (acupuncture, ayurveda, biofeedback, etc.)
  • Manipulation and body-based practices (Alexander technique, physical therapy, chiropractic manipulation, etc.)

Holistic specialist, Bill Connington, Founder of the The Alexander Technique Organization, New York, NY also presented at the Summit and led the eager audience in a group Alexander Technique session. The technique may be especially helpful for people who suffer with chronic pain, postural problems, and movement restrictions. The technique was truly a hit among the group. (Watch a demonstration of the Alexander Technique by The Mayo Clinic.)

ICA would like to thank the US Pain Foundation and The New York Pain Society for holding the educational Summit. It is important that those who suffer from chronic pain conditions like IC and those who care for these patients are educated on the many aspects of pain management. Be sure to check out the ICA’s own patient education event, Empowering IC Patients with Knowledge and Hope.

A Patient & Family Day to Learn About Managing Pain
4/16/2013

Join the Interstitial Cystitis Association (ICA) on Sunday, April 21 as we attend "A Patient & Family Day to Learn about Managing Pain” presented by US Pain Foundation and The New York Pain Society. This one day event is a great opportunity to learn more about pain management, meet other people who suffer with chronic pain, and connect with organizations like the ICA dedicated to the pain community. Some of the topics of the event include:

  • Holistic pain management
  • What to expect when you visit a pain specialist
  • Chronic pain in your body
  • Migraines & headaches
  • Injections for pain
  • Safe use of opioids
  • Advanced options to manage pain

Price: $10 (includes lunch)
Location: Renaissance Westchester Hotel, West Harrison, NY 10604
Time: Check in begins at 8 am; Program starts at 9 am

Sign up today and be sure to stop by the ICA’s booth at the event. We hope to see you there!

Viewers Give ICA Webinar 4.7 out of 5 Stars
4/11/2013

Last week, the Interstitial Cystitis Association (ICA) hosted a free webinar presented by Robert J. Echenberg, MD, FACOG, entitled IC’s Role in CAPPS. Thus far, 475 people have viewed the 90 minute information-packed webinar. Some of what was discussed in the webinar included the multi-disciplinary and holistic approach that is needed to most effectively treat chronic pelvic pain, what Dr. Echenberg gives to every new patient, and why it is important to “turn down the dial” on pain.

During the webinar, Dr. Echenberg also answered viewers’ questions. Our gracious presenter will address questions that were not answered during the webinar due to the time limit. So keep an eye out because we will be posting a list of questions and answers on www.ichelp.org soon.

Until then, be sure to check out the webinar which is now available at any time for your viewing pleasure. If you have already viewed the webinar, make sure you share it on Facebook or Twitter with your colleagues, friends, and family. And if you have yet to see it, don’t miss what is being called a “wonderful, comprehensive, compassionately delivered, informative webinar” by viewers!

Special thanks are in order for Dr. Echenberg for presenting this useful educational webinar to the IC community. And thank you to our generous sponsor, Innovation Compounding whose generosity made the program possible.

Save-the-date: ICA Patient Forum this June
4/11/2013

Thought the ICA webinar was good? Well, this next ICA event is another must see! Mark your calendars for the ICA’s upcoming Patient Forum: Empowering IC Patients with Knowledge and Hope on Saturday, June 29th in Philadelphia, PA. The intent of this all-day, free educational event is to empower IC patients and their loved ones with the knowledge they need to successfully manage and treat IC. Experts in the IC community will cover topics that include:

The forum will close with the ground-breaking session, “What to Do When Standard Treatments Fail.”

More details are coming soon, so make sure you are connected with the ICA so you don’t miss any announcements regarding this free event. Get connected by becoming a member, liking us on Facebook, and following us on Twitter.

Your contributions make these free events possible. Donate today to support the only non-profit health association dedicated to improving the quality of healthcare and lives of people living with IC.

More Cities with IC Billboards—Keep Your Photos Coming!
4/11/2013

Last week, ICA Executive Director, Lee Claassen, CAE, and Program Manager, Nicki Mehall, traveled to New Oxford, PA to see an IC billboard up close and in person. In order to spread IC awareness, the ICA team took photos of their billboard visit to share with us. To view their photos of the New Oxford billboard and other billboard photos that have been submitted from around the country, go to the Get the Facts Photo Gallery.

New IC billboards have been recently posted in OH, GA, CT, MA, and NJ. Check out the Get the Facts page to find the IC billboards nearest you. The photo contest is open, and there are still $25 Amazon gift cards up for grabs. Submit your photo to be one of the four who win a prize.

Do you want to spread IC awareness but do not have a billboard in your area yet? We have now expanded our awareness campaign to Twibbon. Twibbon is a fast and easy way to show your support of the IC cause and to spread IC awareness through social media. Be sure to post a message on the ICA’s Facebook community to let us know you are using the IC Twibbon.

ICA Places Over 1,000 Billboards
3/25/2013

ICA released over 1,000 billboards at the beginning of March to help those suffering from IC symptoms, reccurring frequency, pain, and urgency, take the steps to receiving optimal care. The goal of the campaign is to direct viewers to the ichelp.org website where they can get reliable information about IC. Read the full press release here: http://www.prweb.com/releases/ICA/Billboards/prweb10553903.htm

FREE ICA Webinar — Don't Miss It!
3/21/2013

Almost 100 people have already registered, have you? On April 4th, 2013 at 6:30 pm Eastern, the Interstitial Cystitis Association (ICA) will be hosting a FREE webinar featuring Robert J. Echenberg, MD, FACOG, on the role of Interstitial Cystitis/Painful Bladder Syndrome (IC/PBS) in CAPPS. CAPPS…short for Complex Abdominal-Pelvic Pain Syndrome, is a syndrome of nonmalignant origin consisting of a complex of abdominal and pelvic symptoms that includes a variety of painful bowel, bladder, genital, reproductive, muscular, and nerve dysfunctions lasting at least 3-6 months in duration.

In this webinar, Dr. Echenberg will discuss not only the role of IC/PBS’s in CAPPS, but also the multi-disciplinary and holistic approach that is needed in order to most effectively treat what most practitioners call chronic pelvic pain (CPP). He will explain how IC/PBS should be considered as a “major player” in the broader context of “connecting the dots” in this family of all too common and debilitating conditions. Read more about this webinar at www.ichelp.org/ICsRoleInCAPPS.

Have a question for Dr. Echenberg? When registering for the webinar, you have the ability to enter a question you may have regarding IC and CAPPS. Dr. Echenberg will answer these questions during the webinar. You will also have the ability to ask a question during the webinar. These questions will be answered after the webinar and posted on the ICA’s website at a later date.

This ICA webinar is made possible with the generous support of Innovation Compounding.

Trust us—you don’t want to miss this free webinar! Register today!

Two Months in a Row – ICA in USA Today!
3/19/2013

A big thanks is in order for the generous folks at USA Today. For the second month in a row, the Interstitial Cystitis Association (ICA) was featured in the newspaper’s Charity Spotlight! The ICA is the only nonprofit organization that advocates for interstitial cystitis (IC) research, serves as a central IC education hub for healthcare providers, and raises awareness. This feature is a great way to spread IC awareness nationwide. To learn about other ways you can help raise awareness, check out the IC Awareness Toolkit.

ICA Webinar Featuring Dr. Echenberg Coming Soon—Registration is Free
3/14/2013

On April 4th, 2013 at 6:30 pm Eastern, the Interstitial Cystitis Association (ICA) will be hosting a FREE webinar featuring Robert J. Echenberg, MD, FACOG, on the role of Interstitial Cystitis/Painful Bladder Syndrome (IC/PBS) in CAPPS. CAPPS…short for Complex Abdominal-Pelvic Pain Syndrome, is a syndrome of nonmalignant origin consisting of a complex of abdominal and pelvic symptoms that includes a variety of painful bowel, bladder, genital, reproductive, muscular, and nerve dysfunctions lasting at least 3-6 months in duration.

In this webinar, Dr. Echenberg will discuss not only the role of IC/PBS’s in CAPPS, but also the multi-disciplinary and holistic approach that is needed in order to most effectively treat what most practitioners call chronic pelvic pain (CPP). He will explain how IC/PBS should be considered as a “major player” in the broader context of “connecting the dots” in this family of all too common and debilitating conditions. Read more about this webinar at www.ichelp.org/ICsRoleInCAPPS.

Have a question for Dr. Echenberg? When registering for the webinar, you have the ability to enter a question you may have regarding IC and CAPPS. Dr. Echenberg will answer these questions during the webinar. You will also have the ability to ask a question during the webinar. These questions will be answered after the webinar and posted on the ICA’s website at a later date.

This ICA webinar is made possible with the generous support of Innovation Compounding.

Register for this free webinar today!

DOD Funds Research for IC Diagnostic Test
3/14/2013

We’ve done it again! Together, our advocacy efforts have yet again awarded an IC researcher funding from the Peer-Reviewed Medical Research Program (PRMRP) Department of Defense (DOD) funding stream. This time, our efforts resulted in a $750,000 research grant awarded to Sonia Planey, PhD, Commonwealth Medical College, to potentially develop a definitive diagnostic test for IC.

For years, IC researchers have known that antiproliferative factor (APF), a glycopeptide discovered by Dr. Susan Keay, held promise as a diagnostic biomarker for IC. However, there have been no assays developed that are sensitive enough to measure its concentration in patient urine.

“My laboratory has developed a method that we believe will make possible the first measurements of APF in human urine and thus, overcome barriers that have prevented its validation in the past,” Dr. Planey shared with the ICA. “Funding from the DoD is critical to the testing and refinement of this methodology, which we believe could eventually lead to a non-invasive, diagnostic test for IC.”

“Some patients can go years suffering with IC before they are diagnosed and properly treated. Dr. Planey’s research and her team’s work could speed a patient’s time to diagnosis and to earlier, possibly more effective, treatment,” said Lee Claassen, Executive Director of the ICA.

Dr. Planey is extremely grateful to have ICA Medical Advisory Board members, Drs. Susan Keay and Phil Hanno, as collaborators on this project. “I am also very much aware and appreciative of [ICA’s] advocacy efforts. The ICA was the first organization from which I sought funding five years ago for my ideas related to improving IC diagnosis, and although my proposal was not funded at that time, I was introduced to a remarkable organization that is truly passionate about and dedicated to improving the lives of those with IC and that serves as a valuable resource to me as a researcher in the field,” said Dr. Planey.

The ICA will continue to advocate for IC to be included on the list of conditions considered for PRMRP research funding, as receiving funding is critical to discovering better treatments for those who suffer from the disease. Once again, we ask you to join us in our advocacy efforts. Check out the ICA’s Advocacy Toolkit to learn how you can reach out to your Congressional leaders to tell your IC story and educate legislators about the importance of continued funding for IC research.

Look for updates about Dr. Planey’s research in future ICA Update and ICA eNews articles.

IC Awareness Spreads to Sunny Los Angeles
3/14/2013

More IC billboards are up and spreading IC awareness in sunny Los Angeles! We are in the process of releasing over 1,000 billboards across the nation, so keep checking back to find when and where the IC billboards nearest you are posted.

The Junior Billboard Association (JBA) was gracious enough to have their members donate available billboard spaces to the ICA for the Get the Facts IC awareness campaign. Therefore, space is limited and neither the ICA nor JBA have control over the billboard locations. No IC billboards in your area yet? Don’t worry! There are other ways in which you can help spread IC awareness:

We also encourage you to become a member of the ICA. Membership donations allow us to spread awareness even further, respond to advocacy issues as they arise, monitor and fund the ICA Pilot Research Program, as well as provide the support and hope the ICA strives to provide IC patients and caregivers. Your donations make a difference!

ICA Launches “Get the Facts” Awareness Campaign
3/7/2013

You may have heard about, or even seen, the IC billboards that are popping up across the country. Using a partnership with the Junior Billboard Association (JBA), and the help of ICA Board member, Tony Tyler, the ICA has released over 1,000 IC awareness billboards in 40+ different markets nationwide at a fraction of the cost. Thus far, billboards have gone up in Los Angeles, Denver, Louisville, and Detroit. ICA Board Co-chair, Barb Zarnikow, even spotted one this weekend in Cary, IL! Look for more billboards to appear in more cities within the next week.

These billboards are just the start of the ICA’s nationwide IC awareness campaign. In large part, this campaign is made possible because of the Center for Disease Control and Prevention (CDC) IC Education and Awareness Program. With support from the CDC, the ICA can continue to spread IC awareness to the general public, educate healthcare providers about IC, and empower patients with the tools they need to successfully live with IC. Look for many new IC programs in the coming weeks! Other activities, including ICA’s advocacy efforts, ICA Pilot Research Program, as well as the support and hope the ICA strives to provide patients and caregivers, can only be accomplished with your contributions.

To join us in our latest efforts, go to www.ichelp.org/GetTheFacts and click on the link “Spread the Knowledge” to find out what you can win for helping us spread IC awareness!

ICA in USA Today!
2/19/2013

More exciting news to announce! On Monday, February 18, 2013 the ICA was featured in USA TODAY's Charity Spotlight! We are located on page 2A in the News section. What can you do to help increase awareness? Check out the IC Awareness Toolkit!

View a copy of the full page on the ICA website.

Coming Soon to a Street Near You…
2/15/2013

Urgency… frequency… bladder pain… You know the symptoms of interstitial cystitis (IC), but unfortunately many men and women suffering with these symptoms do not. This is why the Interstitial Cystitis ICA BillboardAssociation (ICA) is in the process of launching IC awareness billboards across the nation! Spreading IC awareness means less men and women will go undiagnosed and untreated—suffering with IC symptoms alone.

So get your cameras ready! Over 1,000 of these billboards will be released in the beginning of March, and we want your photos of the IC billboards in your city or town! Stay tuned for more information regarding the locations of the billboard, release dates, and how you can help us spread IC awareness. Together, we can make a difference.

ICA Videos with the Experts—Now Available on iTunes!
2/14/2013

The Interstitial Cystitis Association (ICA) is pleased to announce that three exclusive new podcasts featuring experts in interstitial cystitis (IC) are now available in the ICA iTunes store! You may recall the launch of these videos on YouTube back in January. Now you can take these videos with you on-the-go by downloading them as podcasts on your mobile device. The podcasts feature interviews with Thomas Chelimsky, MD, Stanley J. Antolak, Jr., MD, and Barry Jarnagin, MD, all filmed at the 2012 IPPS annual meeting.

Be sure to share these podcasts on Facebook, Twitter, and Pinterest!

ICA to Testify at FDA Hearing on Opioids
2/6/2013

The role of opioid drugs in treating chronic pain conditions like interstitial cystitis (IC) has been an increasingly common subject of public discussion over the past few years. FDA and other policymakers have been trying to find a balance between decreasing opioid drug abuse and misuse, while allowing appropriate access to these pain-relieving drugs. For example, you may recall approval of the Risk Evaluation Management Strategy (REMS) in 2012 for extended-release (ER) and long-acting (LA) opioid analgesics as a recent example of the Agency’s ongoing commitment to ensuring that the benefits of these types of opioid drugs continue to outweigh their risks.

Moving past ER/LA opioid issues, FDA is now focusing on the proper use of opioid drugs in general. On February 7th and 8th in Bethesda, Maryland, FDA is holding a public hearing on the Impact of Approved Drug Labeling on Chronic Opioid Therapy to obtain information, particularly scientific evidence, on issues pertaining to the use of opioid drugs in the treatment of chronic pain. These issues include:

  • Diagnosis and understanding of patient pain
  • Understanding and adhering to the labels of pain-treating products
  • Limiting opioid prescriptions and use
  • Abuse and misuse of opioid medicines

At this meeting, the ICA will be testifying on behalf of IC patients everywhere. We will urge FDA to ensure that patients with chronic pain conditions like IC have access to these critical pain medications as the Agency moves forward with regulatory work on the serious issues of opioid addiction and misuse.

Cannot make it to the meeting in person? You can still let your voice be heard! Submit your comments or read other comments already submitted at regulations.gov.

ICA 2013 Forum Survey
1/25/2013

The Interstitial Cystitis Association (ICA) is in the planning stages of the next forum, a one-day event designed to help you learn more about the latest developments in IC research, treatments, and self-management strategies. We would like to get your feedback on the best location and time to hold the event. Please complete the survey below. Thank you for taking the time to help with this process!
Read More

Straight from the Source – New ICA Videos with the Experts!
1/18/2013

Hear it straight from the source! The Interstitial Cystitis Association (ICA) is pleased to announce three exclusive new videos featuring the following experts in interstitial cystitis (IC):

These videos can be viewed on the ICA YouTube page. Be sure to share these videos on Facebook, Twitter, and Pinterest!

What’s New in the New Year
1/10/2013

Have you tried complementary and alternative medicine (CAM)? In the recently published Interstitial Cystitis Association (ICA) CAM survey, 84% of interstitial cystitis (IC) patients said they had tried CAM to manage their IC. To help you learn more about the different CAM techniques for IC and associated conditions, the ICA has made updates to the CAM section of ichelp.org. Here, you can find the latest information on the use of guided imagery, meditation, prayer, and writing therapy for IC pain relief. Each of the new pages can be found under “Mind-Body Medicine.” Check it out and tell us what you think!
Follow Me on Pinterest

The ICA is pleased to bring you these new resources on all things IC. Look for more updates in the coming weeks!

What Do You Think Caused Your IC?
1/10/2013

The exact cause of interstitial cystitis (IC) remains a mystery. What do you think is the cause of your IC?

Join the discussion on the potential causes of IC on the ICA’s Facebook, Twitter, and Pinterest communities!

Take the poll.

New ICA Executive Director: Lee Claassen, CAE
1/2/2013

We are pleased to announce that Lee Claassen, CAE, starts this month as the new Executive Director of the Interstitial Cystitis Association (ICA). Claassen has held a variety of leadership positions in health Lee Claassenand science-based organizations, as well as serving as a member of nonprofit association boards. Most recently, she served as Director for the Spinal Research Foundation, a patient advocacy organization.

“Lee has the ability, solid experience, enthusiasm and leadership skills to be successful in helping to continue to deliver the important mission of the ICA,” stated Barb Zarnikow, co-chair of the ICA Board. For nine years, as a staff member of the American Association for the Study of Liver Diseases, she was involved in health education, industry relations, and an association-run grant program.

Claassen has leadership experience overseeing a wide range of nonprofit association responsibilities, including member recruitment and retention, print and electronic media product development and strategic marketing, and fundraising and organizational development. “These skills are directly transferable and will help the ICA continue to execute its mission on behalf of the millions of people who have interstitial cystitis,” said Eric Zarnikow, co-chair of the ICA Board.

“I am excited and honored to be joining ICA as its next Executive Director,” shared Claassen. “I look forward to working with the Board, ICA staff, and the IC community to continue the ICA's tireless work in advocacy, research, and education. I welcome the opportunity to help improve the quality of life for those suffering with IC and to ensure the continued search for better IC treatments and ultimately a cure.”

During January, Claassen will work closely with outgoing Executive Director Barbara Gordon to transition into this new role.

Your Brain on Pain
12/18/2012

Through brain imaging and other cutting-edge neurobiological research, the mind-body connection and its link to the complex world of pain, are becoming more clearly understood. Learn more in the fall 2012 issue of the ICA Update.

Read about “The Brain on Pain."

The fall 2012 issue of the ICA Update has been mailed to ICA members! Not a member? It’s not too late to join.

Share the Gift of Hope. Buy an ICA Holiday Gift Set!
12/13/2012

Share the gift of hope this holiday season by purchasing an Interstitial Cystitis Association (ICA) Holiday Gift Set. Priced at 60% percent off their retail value, these sets cover important topics in interstitial cystitis (IC) including diet, family, treatments and travel. There is even a set that includes two years’ worth of the award-winning magazine, the ICA Update. This gift set is essential for the newly diagnosed patient, the waiting room of a healthcare provider’s office, or someone who wants to learn more about IC. When it comes to managing IC, knowledge is power. Help empower someone special with these gift sets.

Don’t forget about the other ICA gifts you can give year-round:

This season and year-round, these are the gifts that truly keep on giving!

Share Your IC Story
12/13/2012

Have a story of hope, encouragement, and success with interstitial cystitis? We want to hear it! Submit your story to the ICA's Voices of Hope Blog. Please email your story (500 words max) and personal photo to ICAmail@ichelp.org.

ICA CAM Survey—with Your Input—Published!
11/29/2012

Complementary and alternative medicine (CAM) offers new approaches to managing chronic pain conditions like interstitial cystitis (IC). However, there is a lack of published findings on the use of CAM for controlling IC symptoms, including pelvic pain with associated urinary frequency and urgency.
Read More

Keep Interstitial Cystitis Research Funded!
11/14/2012

With the threat of significant across-the-board cuts to health programs in the federal budget (sequestration), it is now more important than ever to urge Congress to protect funding for all medical research, including research for interstitial cystitis (IC).

Sequestration will result in massive cuts to the FDA, NIH, and CDC—federal agencies that fund and support IC research and awareness. It also includes policy changes that could hurt IC drug development in the private sector. The tremendous strides in IC advocacy we have made will be severely impacted if sequestration goes into effect this January.

Tell Congress to increase—not cut—funding for IC research and awareness programs. Also, share this message on Facebook and Twitter (hashtag: #saveresearch). Time is of the essence!

ICA Advocates for Patient Involvement at FDA
11/8/2012

On October 25, the US Food and Drug Administration (FDA) held a public meeting to kick off their Patient-Focused Drug Development Initiative, a component of the Prescription Drug User Fee Act reauthorization (PDUFA V).
Read More

Protect IC Funding Today!
11/8/2012

Now that the election is over, this is the time to contact your representative and senators locally to educate them on the importance of interstitial cystitis (IC) research and awareness. Legislators are scheduled to be in their districts until November 13th.
Read More

Support the Cause While Shopping at Amazon this Holiday Season
11/8/2012

Make a purchase from Amazon and support the cause! Amazon donates a percentage of sales to the ICA if you click-through this special link to Amazon and then place your Amazon order.

New Ultrasound Device May Reduce Pain
11/2/2012

In last week’s eNews, the Interstitial Cystitis Association reported on the International Pelvic Pain Society’s 20th Annual Scientific Meeting. We have more news to share with you from this event!
Read More

ICA @ IPPS 2012
10/25/2012

On October 18, 19, and 20, the Interstitial Cystitis Association attended the International Pelvic Pain Society’s 20th Annual Scientific Meeting. The meeting provided healthcare providers a detailed overview on the evaluation and management of chronic pelvic pain disorders.
Read More

Advocacy Efforts Yield IC Funding for Research
10/23/2012

We did it! Your advocacy efforts, ICA advocacy efforts resulted in a $1.6 million research award to fund a potential new bladder drug delivery system for anti-nerve growth factor (NGF) therapy for IC.
Read More

ICA Interviews Experts in Nutrition and PT
10/16/2012

The Interstitial Cystitis Association (ICA) is pleased to announce not one, but two exclusive new videos featuring experts in the fields of nutrition and physical therapy! These videos can be viewed the on the ICA’s YouTube page, as well as on the ICA’s iTunes page.

The first video features Barbara Shorter, EdD, RD, CDN, Associate Professor of Nutrition at Long Island University. Dr. Shorter recently presented her work on the shortened Shorter-Moldwin IC and Diet Questionnaire at the 2012 American Urological Association (AUA) Annual Meeting. At the meeting, Dr. Shorter gave the ICA an inside scoop on the questionnaire, including how it is expected to help healthcare providers create a personalized treatment plan for their interstitial cystitis (IC) patients.

We also nabbed an interview with Amy Stein, MPT, author of Heal Pelvic Pain, founder and practitioner of Beyond Basics Physical Therapy in New York City, at the International Society for the Study of Women’s Sexual Health (ISSWSH) Summer 2012 Meeting. Stein was among the specialists who taught at meeting. In the video, Stein gives us an overview on the anatomy of the pelvis, explains how physical therapy can help ease IC symptoms and answers frequently asked questions regarding physical therapy.

Be sure to share these videos on Facebook, Twitter and Pinterest!

ICA @ AUGS 2012
10/12/2012

The ICA attended the American Urogynecologic Society (AUGS) 33rd Annual Scientific Meeting in Chicago, Illinois. The meeting was designed to show the latest advancements, research, and technologies in urogynecology.
Read More

A New and Improved Introductory Disability Kit
10/4/2012

For some, interstitial cystitis (IC) can be severe. It can affect general health, mental health, ability to work, and personal relationships. If these challenges prevent you from being gainfully employed, there may be a need for financial assistance.

If you or someone you know is in need of short-term, long-term or social security disability insurance, consider ordering the ICA’s Introductory Disability Kit—an important resource to have when applying for disability insurance. The updated kit is available in the ICA’s store for a new low price.

Everyone Can Make a Difference
10/2/2012

Have you ever wanted to donate to the ICA, but felt like what you had was not enough? Or maybe you have wanted to spread interstitial cystitis (IC) awareness, but did not think your voice was loud enough to be heard? Mary Clare, a middle school student whose mother has IC, did not let anything get in the way of her raising funds and awareness for IC. Her inspirational story can be found here.

We have been able to use the funds Mary Clare raised to help several IC patients struggling to renew their ICA memberships. There are several ways you can follow in Mary Clare’s footsteps and make a difference in the IC community:

Columbus Day
10/1/2012

The ICA will have a skeleton crew on Monday, October 8, 2012 in recognition of Columbus Day, so it may take longer to respond to calls and emails.

The ICA Spreads Awareness in USA Today!
9/26/2012

USA TodayLast week, the Interstitial Cystitis Association (ICA) had a two-page spread in the USA Today Chronic Pain supplement! The ICA partnered with Mediaplanet USA for their Chronic Pain campaign. The supplement included a story by Barb Zarnikow, ICA Co-chair of the Board of Directors, on her journey with interstitial cystitis (IC) pain. There is also an educational article on living with interstitial cystitis, and a plug for the ICA’s Newly Diagnosed Toolkit. Make sure you check out the Chronic Pain supplement (we are on pages 12 and 13), now available online.

The ICA continues to spread IC awareness to help others understand more about IC, what it is and the unique challenges to living with a painful chronic condition like IC. And you can too! If you live in one of the cities that ran the supplement in the USA TODAY (NY, Chicago, LA, and Philadelphia), take a photo with the ICA’s spread and Pin it and let us know or post it to the ICA’s Facebook community. We will “like” your photo. You can also check out the ICA’s IC Awareness Toolkit for more ideas.

Follow Us on Pinterest!
9/13/2012

For the past few years, you have shared your interstitial cystitis (IC) stories through the ICA’s Facebook community. The ICA is pleased to join yet another online social network—Pinterest. The ICA Pinterest community will be a “virtual scrapbook” where you can share your IC journey through images. This community provides an additional means of patient to patient support. It will also increase awareness of IC.

You can also follow the ICA on Twitter and YouTube!

Tips from “A Patient's Perspective”
9/13/2012

Patricia Cyr, author and IC patient, has recently written a book entitled A Patient's Perspective: Tips for Your Doctor Visits and More. The book gives advice on how to overcome the obstacles of living with a chronic illness. Whether it is making medical appointments, dealing with clerical errors, or applying for disability, Patricia Cyr covers it all. To buy this book and other books recommended by IC patients, check out the Interstitial Cystitis Reading List.

New Director for the Office of Research on Women's Health Announced
9/13/2012

National Institutes of Health Director Francis S. Collins, MD, PhD, recently appointed Janine Austin Clayton, MD, as Director for the Office of Research on Women's Health (ORWH) and Associate Director for Research on Women's Health, NIH. Dr. Clayton has been serving as ORWH Acting Director since the retirement of Vivian Pinn, MD, in August 2011. A board certified ophthalmologist, Dr. Clayton's research interests include autoimmune eye diseases, and the role of sex and gender in health and disease. Dr. Collins said, “I look forward to seeing ORWH's progress in promoting women's health and sex differences research at NIH advance even further under Janine's direction. She has a great legacy to build upon, and I have every confidence that she will succeed."

To learn more about the NIH's Office of Research on Women's Health, go to http://orwh.od.nih.gov/

Support Group Updates and Other News
9/1/2012

Read More

NIH Workshop on Chronic Overlapping Pain Conditions
8/27/2012

On August 13th and 14th, the National Institute of Dental and Craniofacial Research (NIDCR) and the National Institute of Neurological Disorders and Stroke (NINDS), together with the NIH Pain Consortium, sponsored a workshop on chronic overlapping pain conditions. The workshop was co-chaired by Daniel Clauw, MD, from the University of Michigan and Elizabeth Unger, MD, PhD, from the Centers for Disease Control and Prevention.
Read More

Coming Soon . . .
8/15/2012

The Summer 2012 issue of the ICA Update will soon be on its way to members.

In this issue:

  • Pain vs. Sleep vs. Pain: Break the Vicious Cycle
  • Time for Two
  • ICA News
  • Doctor’s Forum: Mind, Body, and Soul

Find out more about this issue.

Not a member? Join now, and your subscription to our information-packed magazine will start with this exciting issue.

NIH Multidisciplinary Pain Program
7/25/2012

The National Center for Complementary and Alternative Medicine (NCCAM) is launching a new research program focused on pain. Led by Catherine Bushnell, Ph.D., an internationally recognized pain and neuroscience researcher, this collaborative effort will bring together basic science and clinical research efforts to better understand and treat chronic pain disorders such as interstitial cystitis (IC).

The program will investigate the role of the brain in pain processing and control, and how factors such as emotion, attention, environment, and genetics affect pain perception. The program will also explore how chronic pain produces changes in the brain that can modify how the brain reacts to pain medications like opioids. This will be especially important since opioids are often used in the management of IC pain.

Want to ensure IC is one of the chronic pain disorders studied in this new research program? Let the Director of NCCAM, Josephine P. Briggs, M.D., know! First, thank Dr. Briggs for launching extremely valuable program. Second, tell her your IC story. Third, encourage her to make IC a priority for this new program.

FDA Aims to Reduce Abuse of Opioid Pain Relievers
7/12/2012

On Monday, July 9, the Food and Drug Administration (FDA) released new requirements for prescribing opioid prescription pain medicines. With the goal of reducing risks associated with misuse, addiction and overdose, the FDA released a “risk management plan” for a class of opioid medications used to treat moderate to severe chronic pain. The aim of the plan is to ensure health care professionals are trained on how to properly prescribe these medicines and how to instruct their patients about using them safely. More at: www.fda.gov/ForConsumers/ConsumerUpdates/ucm307821.htm.

Radio News Flash—Yes, They Did Say IC
7/12/2012

Kudos to Patty Cyr and her husband for raising awareness about IC last week among listeners of WWUH, 91.3FM (West Hartford, CT)! In case you missed it, check out www.wwuh.org to hear the broadcast of the ICA public service announcement.

Advocacy Fireworks and Parades
6/29/2012

Read about the Supreme Court Health Reform Ruling and Food and Drug Administration Safety and Innovation Act…
Read More

Happy Fourth of July!
6/29/2012

The ICA is closed Wednesday, July 4th in celebration of Independence Day. As usual, we are find 24/7 help and support through the ICA social networking community.
Read More

Barbara Gordon, RD Leaving ICA This Summer
6/25/2012

Note from Eric & Barb Zarnikow, ICA Co-Chairs:
We are writing to let all of you know that Barbara Gordon will be leaving her role as Executive Director of the ICA later this summer.
Read More

IC Advocates in Action
6/18/2012

Check out this week's ICA eNews.
Read More

ICA Office Closed for Memorial Day
5/25/2012

The ICA office will be closed Monday, May 28 in honor of Memorial Day.

Find 24/7 help and support through the ICA social networking community.

ICA Daily Reports from 2012 AUA Meeting
5/21/2012

ICA @ AUA - Check back for daily reports from the 2012 meeting!
Read More

ICHelp Celebrates National Women's Health Week
5/8/2012

Why would a woman with IC want to celebrate National Women’s Health Week? Well, 3 to 8 million women in the United States may have IC. Women are often the caregivers for their loved ones, putting the needs of their spouses, partners, children, and parents before their own.
Read More

Email Woes
5/8/2012

In shifting the ICA email to a new system, we experienced a few hiccups. Our apologies if you sent an email and did not receive the usual quick response from the ICA. If it has been a couple of days or more that you have been waiting for a response to your email, please resend it to ICAmail@ichelp.org. Hopefully, we’ve got the issue resolved and your note will not get catapulted into cyberspace this time! Thanks again for your patience as we work through this technical technicality.

ARHQ Chronic Pelvic Pain Therapies for Women
5/8/2012

The US Department of Health and Human Services (HHS) Agency for Healthcare Research and Quality (AHRQ) recently released a plain-language patient publication and clinician summary that compares treatments for patients diagnosed with noncyclic chronic pelvic pain (CPP). Interstitial cystitis is highlighted in the list of chronic pelvic pain conditions. These products summarize evidence on the effectiveness, benefits and harms of surgical and nonsurgical treatments for women. This review found there is evidence lacking to support a surgical approach for treating CPP. These materials and many others are available on AHRQ's Effective Health Care Program Web site, www.effectivehealthcare.ahrq.gov/options.

ICA Update Recognized with EXCEL Award by the Association Media & Publishing
4/17/2012

A Silver EXCEL was awarded to “Running Ahead of Research on Medical Marijuana,” one of the feature articles in the fall 2011 issue of the ICA Update.
Read More

Lyme and IC?
4/10/2012

The Dr. Melanie Show
April 12 at 1pm EST

Patients and a nurse practitioner will discuss this anecdoctal link and encourage listeners to ban together to push those research dollars to look deeper into such connections.

So You Have IC, Now What?
4/10/2012

Check out the ICA's Newly Diagnosed Toolkit.

And let us know if you catch the ICA Facebook Ads about the toolkit.

An IC Birthday Wish
3/15/2012

Barb and Eric Zarnikow, the co-chairs of the Interstitial Cystitis Association (ICA) attended the 47th birthday party of Jesse Jackson, Jr., Congressman for Illinois's 2nd district. In addition to wishing him a happy birthday, the Zarnikows thanked Congressman Jackson for his support of programs benefiting the interstitial cystitis (IC) community and asked him to continue to be a voice for the millions of people with IC. They shared Barb’s IC story and Eric’s experience as the spouse of an IC sufferer. They also discussed the need to raise awareness about this painful chronic bladder condition by including dedicated IC-funding in the federal budget.

Pain in America: Exploring Challenges to Relief
2/22/2012

Recently, the Senate Health, Education, Labor, and Pensions (HELP) Committee met to discuss the Institute of Medicine (IOM) report, “Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research.”

US Senate Working on Drug Shortage Problems
2/9/2012

Drug shortages are becoming an ongoing problem for many patients and health care providers. Two primary reasons include an increased demand for certain drugs and wider scope of use for many medications. Recognizing the difficulty that drug shortages pose for patients with chronic conditions like interstitial cystitis, the US Senate passed the Preserving Access to Life-Saving Medications Act which requires that pharmaceutical companies inform consumers and doctors sooner regarding probable shortages. This bill requires the FDA to not just notify the public about shortages, but also to inform all of us about potential shortages. It also directs the FDA to provide regular updates to the public about shortages and work with manufacturers to develop strategies to address production problems.

This bill will help ensure that people with IC and other patients have access to the medications they need when they need them most. The bill has been referred to the House for review and consideration. The ICA is tracking this bill and will keep you informed as this legislation moves forward. Follow us on Twitter, handle ICHelp—we regularly tweet notifications about shortages.

Check Your Pain Pills!
1/18/2012

FDA has put out an alert to healthcare professionals and patients to inspect their opioid pain medications carefully. A packaging problem with Endo Pharmaceuticals products at a Novartis Consumer Health manufacturing site may have caused certain opiate painkillers to be packaged with other products. That may mean a stray pill of one medicine might end up in the bottle of another.

Patients should not be unduly alarmed, said FDA, because the chance that the wrong pills are being dispensed to patients is low. But just to be safe, take a look at your pills and check with your pharmacist if you have any doubts about getting the right medication. FDA is actively working with Novartis and Endo to address the manufacturing problems.

Here are the products that may be affected by the problem (see also www.endo.com):

  • Opana® ER (oxymorphone hydrochloride) Extended-Release Tablets CII
  • Opana® (oxymorphone hydrochloride) CII
  • Oxymorphone hydrochloride Tablets CII
  • PERCOCET® (oxycodone hydrochloride and acetaminophen USP) Tablets CII
  • PERCODAN® (oxycodone hydrochloride and aspirin, USP) Tablets CII
  • ENDOCET® (oxycodone hydrochloride and acetaminophen USP) Tablets CII
  • ENDODAN® (oxycodone hydrochloride and aspirin, USP) Tablets CII
  • MORPHINE SULFATE Extended-Release Tablets CII
  • ZYDONE® (hydrocodone bitartrate/acetaminophen tablets, USP) CIII

In the coming weeks there may be periods of shortages for these products.

For more information, go to http://www.fda.gov/Drugs/DrugSafety/ucm286226.htm

New IC Treatments—Winter 2012 ICA Update
1/18/2012

The Winter 2012 issue of the ICA Update will soon be on its way to members.

Find out more about this issue.

Dr. Melanie Radio Program - Women's Health Research
1/18/2012

Tune in for an interesting segment highlighting two women working to make the world a better place.
Read More

Happy New Year from everyone at the Interstitial Cystitis Association!
1/12/2012

Thanks to everyone for their year-end gifts. Your generosity will help us to continue to be your voice as we advocate for research and raise awareness and to serve as the central information hub for the millions of people with IC and their families, the healthcare providers who care for them, and the researchers working to find better treatments and a cure.

Our work on your behalf continues in 2012 from a new location. We've moved to shared office space across the river. Here's our new address and phone and fax numbers:

Interstitial Cystitis Association
1760 Old Meadow Road, Suite 500
McLean, VA 22102
www.ichelp.org

Email: ICAmail@ichelp.org

ICA Skeleton Crew…ichelp Open 24/7
12/22/2011

The ICA will have a skeleton crew between December 23, 2011 and January 3, 2012. We will be open again on Tuesday morning. However, we’re open 24/7 online at

See you in cyberspace!

Therapeutic Discovery Project
12/22/2011

On December 14, 2011, the ICA joined forty three patient and health advocacy groups in sending a letter to the chairmen and ranking members of the Senate Committee on Finance and the House Committee . . .
Read More

Newly Updated ICA Resources
12/15/2011

The ICA recently released updated versions of four of our signature brochures, along with a new and improved version of the ICA Restroom Access Card. Check out the new items in the ICA store:

  • Sex and IC—Like other chronic illnesses, IC can have a disruptive effect on sexuality and relationships. Learn more about IC and sexuality.
  • IC and Vulvodynia—Many IC patients struggle with vulvar pain. Learn more about treatment and coping strategies.
  • Real Men Get IC—the latest research known about men with IC, including treatment options
  • About Interstitial Cystitis—A great overview for the newly diagnosed patient.
  • ICA Restroom Access Card—Plastic wallet card describing IC, designed to assist you in obtaining use of toilet facilities in public places. The language on the card was reviewed and updated by a volunteer lawyer with IC to ensure it provides the needed medical alert language!

Members receive 50% discount on all ICA store items—and, this significant savings applies to both single and bulk shipments.

The Importance of Research for IC Patients
12/7/2011

Research is essential to find effective treatments for IC and other related conditions. It is a process to design a proposal, submit it, present it, get it approved, and then be able to find subjects willing to participate. Listen to Dr. Melanie's radio show to learn about the process and how you can volunteer to be part of a study.
Learn More.

Dr. Melanie—Relieving Pelvic Pain/ IC with Aloe
11/22/2011

Enthusiastic about about aloe vera, Dr. Melanie interviewed Pat Criscito, president and CEO of Desert Harvest and chemist Bart Bellamy, president of Ceba-Tek, Inc, which manufactures Desert Harvest products. According to the company, aloe vera benefits the body in four unique ways. It has the ability to reach the deepest body tissues, some seven layers deep, unlike most lotions, liquid substances, and water, which will penetrate only two layers of skin. Aloe has six antiseptic agents—lupeol, salicylic acid, urea nitrogen, cinnamic acid, phenol, and sulfur—which kill bacteria, viruses, and fungus. It also stimulates birth of new, healthy tissue up to six to eight times the normal rate. What's more, aloe detoxifies and normalizes your metabolism. Listen on ICA iTunes.

Advocacy @ NIH—Laura Santurri
11/22/2011

This past week, IC Patient Advocate Laura Santurri joined ICA Executive Director Barbara Gordon at the National Institute of Diabetes and Digestive and Kidney Disease (NIDDK) meeting on Measurement of Urinary Symptoms.
Read More

NEW—Let’s Pull Together “Imagine No IC” Fundraising Toolkit
11/10/2011

We are honored to be contacted so often by passionate members of the IC community asking about helping to raise funds for interstitial cystitis awareness and research. ICA staff collected notes from these conversations and with the help of some generous volunteers created the “Imagine No IC—Let’s Pull Together” Fundraising Toolkit. Version 1.0 of the toolkit was recently launched.

The toolkit has lots of ideas on how to help raise funds for the cause. It also provides a roadmap for planning your fundraising event or drive. Have fun putting your artistic, musical, athletic, cooking, or other talents to work, and rally your coworkers and community for the cause! Current community fundraising initiatives are highlighted in the “Active Fundraisers” section of the toolkit.

Please join us in thanking the toolkit’s development team including IC patients Barbara Zarnikow, Claudia King, Lauren Snyder and Debra Kerr; ICA staff Deborah Lovin, Barbara Gordon, Nicki Mehall; and designer Michael Satina. Take a look and let us know what you think. Thanks again to everyone for helping to raise funds for the cause and the ICA!

Dr. Melanie on Healing Painful Sex
11/9/2011

It is estimated one in every five or six women have sexual pain. It is hard to talk about, even with a physician. Many women do not tell anyone. Gynecologists are often not experienced in treating sexual pain and are often uncomfortable talking about it. Sexual pain is real and is almost always caused by an identifiable, verifiable medical condition, and in the vast majority, it can be treated effectively.

Listen to learn how Dr. Deborah Coady and Nancy Fish, MSW, MPH, answer your questions in the new book Healing Painful Sex: A Woman’s Guide to Confronting, Diagnosing, and Treating Sexual Pain.

Medical Marijuana, Gluten-free Diets
10/13/2011

The fall 2011 issue of the ICA Update is at the printer and will soon be delivered to ICA members and magazine subscribers. This award-winning, quarterly magazine with in-depth stories about IC research, treatment, and lifestyle issues, is mailed to donors who make an annual gift of $45 or more.

And, yes, we said award-winning! Most recently, two articles and a special issue of the ICA Update won 2011 National Health Information Awards:

Let the Potty Start
10/13/2011

Check out “A Girl’s Guide to Plumbing” in the November 2011 issue of the Ladies Home Journal (LHJ). Last August, the ICA reached out to the health editor of this national women’s magazine and encouraged coverage about IC in an upcoming issue. LHJ agreed. For their more than 2.5 million women readers, LHJ highlights bladder problems, such as urinary tract infections, incontinence, and interstitial cystitis, which women suffer from more often than men. Thanks to LHJ for helping to get the word out to their readers about IC through this creative and clever feature story.

PROSED DS Manufacturing Glitch
10/13/2011

Ferring Pharmaceuticals reports that a temporary manufacturing issue has halted production of PROSED DS. At this time, Ferring told the ICA that they recommend IC patients discuss with their healthcare providers alternatives to PROSED DS. Here’s a list of non-opioid medicines that may help reduce pain, burning, urgency, frequency, and bladder spasms. If you currently take PROSED DS, print this list and bring it with you to your next doctor’s appointment. Ask if any of these medicines are an alternative for PROSED DS for you.

Meeting on Measurement of Urinary Symptoms (MOMUS) at NIH
10/6/2011

The National Institute of Diabetes and Digestive and Kidney Disease (NIDDK) is hosting a public meeting on Measurement of Urinary Symptoms. NIDDK invites urologists, patients, other clinicians, researchers, industry, advocacy groups, and other government agencies to join them on November 14-15, 2011, at the National Institutes of Health, Natcher Building.

The agenda focuses on the development of a better tool for evaluating urinary symptoms common to both in men and women. Organizers hope to generate effective tools which both help measure differences in symptoms across subgroups of patients (phenotyping) and early, late, transient, and persistent urinary tract symptoms.

We are pleased to report that IC patient Laura Santurri, MPH, CPH, has agreed to serve on a patient panel and share her experience to help researchers and clinical scientists understand the challenges of living with IC symptoms.

Register at www2.niddk.nih.gov/News/Calendar/MOMUS2011.htm.

Recall on PROSED/DS TB ATROPINE Free 100
9/23/2011

The ICA spoke to Ferring Pharmaceuticals today about the recall of PROSED/DS TB ATROPINE Free 100.

The following lots have been recalled from pharmacies:
101329
102285

Because pharmacies usually re-label the bottles without lot numbers, if you have any questions about your Prosed DS, please call your pharmacy so they can tell you whether or not your prescription is affected.

Both lot numbers represent virtually all of the Prosed DS that has been shipped to pharmacies recently. Doctors may have some samples available from a different lot number. If your Prosed DS has been recalled or you cannot fill your prescription, please contact your physician for a possible substitute medication.

Ferring Pharmaceuticals is not able to say at this time when Prosed DS will be available again, but they are working on the problem, which was the potency of one of the ingredients, hyoscyamine sulfate, through the established shelf life.

New on ICA iTunes
9/15/2011

IC Can Hurt: Emotionally and Sexually

Download Dr. Melanie Barton’s Voice of American radio show exploring how IC affects so many areas and people in the patient’s life. Loved ones suffer not knowing how to help. Children of IC/pelvic pain patients grow up missing the normal activities that other families take for granted. Sports events, traveling, or shopping all require more energy and bathroom stops for the patient than the family can tolerate. The family learns to go without the person or to just all stay home. Intimacy between partners becomes strained or non-existent due to painful sex.

Tony Tyler new ICA Board member will tell us what it is like to have a dad with IC. Amy Stein, MPT, author of Heal Pelvic Pain will tell us how sexual pain can be lessened or alleviated through physical therapy.

Are You a Federal Employee?
9/15/2011

Please Make Your CFC Pledge to Support the ICA (CFC #10578)

We are honored to be included the Combined Federal Campaign, a collective effort of federal employees to give back to the community through financial pledges to charities of their choice.

Federal employees can support the Foundation Center through the campaign from September 1-December 31, 2011. Your gifts help us to fuel vital programs and services such as this free eNews letter.

NY Medicaid Changes in Pain Med Formularies
9/15/2011

The New York State Medicaid program recently posted changes to pain medicines include in the formulary of approved medicines. Thanks to our friends at the US Pain Foundation for sending this item to us for dissemination. Here’s a list of some of the noted changes by Medicaid plan. However, at this time, not all plans are posted on the NY Department of Health website. As of October 1, many NY patients with pain will be required to switch to medicines that are listed in the approved formulary for their health plan.

IC, PT, and TT
9/6/2011

This week's line up for the Dr. Melanie VOA radio show includes two IC speakers:

  • PT Amy Stein with more of her pearls on physical therapy for pelvic pain.
  • Tony Tyler, ICA Board member, who shares his father's story and his passion for the cause.

Join us Thursday, September 8, 2011 at 1PM eastern at www.voiceamerica.com/show/1929/the-dr-melanie-show.

ICA Closed Labor Day…ichelp Open 24/7
8/30/2011

The ICA will be closed in observance of Labor Day on Monday, September 5th. We will be open again on Tuesday morning. However, we’re open 24/7 online at

See you in cyberspace!

FDA Approves Botox for UI
8/25/2011

Yesterday, the FDA approved Botox injection to treat urinary incontinence (UI) in people with neurologic bladder conditions such as spinal cord injury and multiple sclerosis who have over activity of the bladder. The effectiveness of Botox to treat this type of incontinence was demonstrated in two clinical studies involving 691 patients. Both studies showed statistically significant decreases in the weekly frequency of incontinence episodes in the Botox group compared with placebo.

Injection of the bladder with Botox is performed using cystoscopy, a procedure that allows a doctor to visualize the interior of the bladder. Cystoscopy may require general anesthesia. The duration of the effect of Botox on urinary incontinence in patients with bladder overactivity associated with a neurologic condition is about nine months.

In addition to its use to improve the appearance of facial frown lines, Botox also is FDA-approved to treat chronic migraine headaches, certain kinds of muscle stiffness and contraction, severe underarm sweating, abnormal twitch of the eyelid and a condition in which the eyes are not properly aligned. While not a FDA-approved for the treatment of interstitial cystitis, the use of Botox to treat IC is becoming more common. Will IC soon be added to this list of FDA-approved indications? Stay tuned.

IC Patient Nominated for an Emmy!
8/18/2011
Living with interstitial cystitis (IC) poses challenges that others can’t begin to understand. That’s why we wanted to share with you the stories of four more IC heroes and their incredible accomplishments as actors, advocates, artists, and authors.

    • Actor Paul McCrane—Nominated for an Emmy as Outstanding Guest Actor in A Drama Series 2011! Paul was one of the patients who shared his story with Congressional leaders during a past ICA Capitol Hill walk. There’s more about this in the ICA 2007 Annual Report.

    • Advocate Linda Salin—Celebrates 22 years of being one of the “IC angels” who respond to the emails and calls the ICA receives from patients, family members, healthcare providers, researchers, and the general public. Cristina S. speaks for all of us when she says,

        “Speaking to you gave me hope and helped me realize that there are different treatment options for my illness. Your encouragement also empowered me to finally take the stance that I am not going to live the rest of my life in pain.”

    • Artist Trisha HoekwaterThe national art competition, Artprize, starts September 21 and Trisha has created the worlds largest working slide puzzle which will be on display in downtown Grand Rapids, Michigan from September 21 to October 9.

    • Author Ed Lopatin—Great job Ed! You did a terrific job on the Dr. Melanie Voice of America radio show last week! Ed discussed his new book—Manage Your Chronic Illness, Your Life Depends on It. Listen to the archived show, which also includes an interview with urologist David Burks, MD. Our thanks to David for taking the time to share information about the new AUA IC Clinical Guidelines.

Support IC research—make a donation to the Imagine NO IC Pilot Research Program.

Probiotic May Bust IC Pain
8/2/2011

Don’t miss the Summer 2011 issue of the ICA Update

Read our interview with David Klumpp, PhD, whose research points to a probiotic that might ease IC pain. At the last American Urological Association annual meeting, the findings were called a potential breakthrough.

IC researchers had more fresh ideas they presented at that meeting, which you can read in our coverage.

It’s been a long time since we learned something new about pregnancy in IC patients, and the survey many of you participated in did just that. The results and what they mean for you are detailed in our report on the survey.

If you’re a woman with IC past your childbearing days and facing another challenge—menopause—the ICA Update article on menopause options should help you make the best decisions for you and your IC.

Dr. Melanie Barton—VOA Airways and Care Ways
7/21/2011

Don’t miss Dr. Melanie’s radio show on August 11, 2011. Learn about the AUA Guidelines from urologist David Burks, MD who served on the committee that developed them. She’ll also be interviewing interstitial cystitis (IC) patient Ed Lopatin. Ed will be sharing his experience with IC and discussing his upcoming book—Manage Your Chronic Illness, Your Life Depends on It. Coming soon to book stores, this new resource has 100—yes, 100—recommendations for managing your health care, getting the most out of your physician visits, tips on hospital stays, help for caregivers, and more!

Elmiron Shortage is Over!
7/11/2011

Here's the note from Ortho:

      Janssen Pharmaceuticals, Inc., would like to provide you with a product availability update for ELMIRON® (pentosan polysulfate sodium) 100-mg capsules. We have now resumed shipments of ELMIRON® to distributors and pharmacies.

      For a limited time, prior participants are eligible for the EarlyAssist™ co-pay support program. Patients may pay no more than $5 per month for up to 4 months. Visit www.orthoelmiron.com to register.

      If you are currently taking ELMIRON®, you should check with local pharmacies and plan treatment accordingly with your healthcare professional.

      The priority is to reestablish supply as quickly as possible.

Institute of Medicine Report on Relieving Pain
7/7/2011

The Institute on Medicine (IOM), a nonprofit policy organization, released a comprehensive report on the impact of chronic pain on 116 million American adults, entitled Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research. ICA Medical Advisory Board member, Ursula Wessleman, MD, served on the expert committee that compiled the report. ICA Executive Director Barbara Gordon, RD, provided public comments to the IOM as well as response to specific inquiries posed by the committee about the impact of IC.

This report highlights the need to focus on ensuring better care for people living with daily pain such as IC patients. It also highlights the need for more medical education about the special needs of chronic pain sufferers. Unfortunately, the results of the landmark RICE epidemiology study were not incorporated. The IC prevalence numbers used in the report are well below the 4 to 12 million we now know to be true. Why? The authors were required to draw from the results of published findings and the RICE study had not yet been published.

The report is available for free download—the functionality of the IOM website is a bit tricky your persistence is awarded with great information about the need to do more for chronic pain patients. Download the IOM Report on Pain Care, Education and Research.

ICA Welcomes Two New Board Members
7/7/2011

The ICA welcomes two new members on the organizational Board or Directors:

    • Tony Tyler was born and raised in Oklahoma. After earning a bachelor’s degree in history, Tony began his career at Tyler Media—a media company consisting of five radio stations, three TV stations, and an outdoor advertising company. The Tyler family has been in the media business for nearly 50 years. Tony works alongside his brother Ty and his father Ralph, who has IC. He is active in community service and married to his high school sweetheart, Shelley. They have four children and live in Norman, OK.

    • Irma Rodriguez, a patient and longtime supporter of the ICA. After a 25-year career in higher education, she has transitioned to a focus on furthering diversity in government and industry. Irma has also been a leader in professional, community, and national organizations dedicated to these issues and has been honored as a Kellogg Foundation Fellow and a Hispanic Leadership Fellow. A resident of Georgia, she is currently the manager of Diversity and Workplace Fairness with The Coca-Cola Company’s Corporate Global Office of Diversity and Workplace Fairness.

ICA Provides Oral Testimony to Congress
6/27/2011

Mid-morning on June 22, in a Senate office building in Washington, DC, the voice of IC patients was heard by members of the Senate Defense Appropriations Subcommittee: 

“Chairman Inouye, Ranking Member Cochran, and distinguished members of the Defense Subcommittee, thank you for the opportunity to present testimony today on interstitial cystitis commonly known as IC. I am Barbara Zarnikow from Buffalo Grove, IL. I am an IC patient and co-chair of the Interstitial Cystitis Association, a non-profit organization which provides advocacy, research funding, and education for patients living with IC.”

Joining forces with other health advocates on Capitol Hill, Barb educated Senators about how IC impacts military men and women and their families, thus explaining why IC should be included in the peer reviewed medical research program. Barb shared the findings of a study conducted between 1999 and 2002 which found that approximately 1.4% of veterans served by the Veterans Health Administration (VHA) were being treated for IC. The study also showed a 14% increase in patients being treated for IC in VHA during this same period. This echoes findings of prevalence among the general population which shows the incidence is much higher than previously thought.

IC research is currently funded as part of the Department of Defense Peer-Reviewed Medical Research Program. On behalf of IC patients, including the many veterans affected by IC, Barb requested that IC continue to be eligible for the Peer-Reviewed Medical Research Program for fiscal year 2012.

IC Advocate Martha Hart Dies at Age 93
6/27/2011

Martha Isabelle Hart, a former Michigan State Coordinator for the Interstitial Cystitis Association and much-loved “hugging grandmother” passed away on June 16, 2011. Martha’s efforts to help IC patients and their families across the state were appreciated by so many. We are grateful for her dedicated service. Our hearts go out to her friends and family including her four sons, five daughters-in-law, 19 grandchildren and six great-grandchildren. Her caring outreach and desire to dedicate her time and energy to the IC Association was a tremendous gift.

The family has asked that memorials be made in honor of her memory to the Interstitial Cystitis Association. Please make your memorial gifts may be made online at www.ichelp.org/memorialgift.

Now in Print: Higher IC Prevalence Statistics
6/17/2011

In April 2009, the ICA reported that 3 to 6 percent of American women—3 to 8 million of them—have IC symptoms. That new prevalence estimate presented by the RAND IC Epidemiology (RICE) research team was the biggest IC story at 2009’s annual meeting of the American Urological Association (AUA).

This month’s Journal of Urology® includes an article detailing these and other findings of the RAND study which surveyed 150,000 US households and found that IC is likely much more common than most experts thought.

Though this may seem like old news, this is really big news! Having the higher IC prevalence statistics published in a peer-reviewed journal, such as The Journal of Urology, gives the findings a stamp of approval which communicates to researchers, clinicians, and others that these results are significant. Study conclusions also provide new insights into the continued challenge for IC patients to get a diagnosis and need for continued medical education about IC and diagnosis. Read a summary of the study.

Midnight Madness? You are Not Alone.
6/3/2011

Congrats to Dr. Alis Kotler Panzera on publication of her study results on IC and sleep quality! Maybe you were one of the 700 patients who responded to Dr. Panzera’s sleep survey posted through the ICA website a few years ago?
Read More

ICA Update Editor Wins AMWA’s Eric Martin Award
6/1/2011

ICA Update editor Penny Allen won the 2011 American Medical Writers Association’s (AMWA) Eric W. Martin Award. This highly competitive writing award honors AMWA members who have had an article published in a reputable publication for either the public or professional audience.

www.ichelp.org 2011 Web Health Awards Winner
5/25/2011

ICA is Honored in Winter/Spring 2011 Web Health Awards℠ Competition

The website of the Interstitial Cystitis Association (ICA), www.ichelp.org, was selected as a winner in the 13th annual Web Health Awards℠ program. This competition recognizes the nation’s best digital health resources.

Read More

Elmiron Shortage
5/20/2011

Ortho Women’s Health & Urology reported to the Food and Drug Administration that supplies of the 100 mg capsules of pentosan polysulfate sodium (Elmiron) are backordered. The shortage could last for several months. Depending upon your pharmacy’s current stock, it could be several months before you are able to refill your Elimiron prescription.

If your prescription of Elmiron is low, talk with your doctor about options to get you through the next few months. Please check with Ortho directly with any questions—visit the Elmiron website (www.orthoelmiron.com) or contact the Customer Call Center at 800-526-7736.

The ICA will also keep you posted as we get status updates. Stay abreast of the news—subscribe to the ICA eNews blasts.

Dr. Joshi on Pain Management
5/3/2011

Many people live with chronic pain. All too often, if observers cannot see something, they do not believe it exists. People, often including the physicians treating the patient, accuse the ill person of fabricating the pain or exaggerating it to seek drugs. Dr. Melanie will interview Dr. Joshi about his approach to pain management and how he helps IC patients, as well as those with overlapping conditions such as fibromyalgia and headaches.

Physical Therapy Help for Pelvic Pain
4/20/2011

Listen to Amy Stein, MPT, author of Heal Pelvic Pain, share how people who have interstitial cystitis (IC) or pelvic pain may be able to heal without surgery.

Amy Stein on Dr. Melanie Barton Voice of America radio show on Thursday, April 28 at 2PM. Amy Stein is the founder and a practitioner of Beyond Basics Physical Therapy in NYC, specializing in pelvic floor dysfunction, pelvic pain, women’s health, and manual therapy for men, women, and children while taking a holistic approach to each patient’s entire well-being.

Join us for this FREE radio program and learn from a pioneer in the field of physical therapy. Amy is also a contributor to the medical textbook, Female Sexual Pain Disorders: Evaluation and Management, and serves on the board of the International Pelvic Pain Society, since 2007. She is a well recognized expert in her field, lectures nationwide, and has been interviewed in media outlets ranging from the medical segments of popular TV news shows, like ABC’s 20/20 to such newspapers as the New York Daily News to internet sites like www.ourgyn.com. She is also an editor of painchannel.com and a member of the Interstitial Cystitis Association (ICA), National Vulvodynia Association (NVA), as well as many other organizations.

Beloved Doctor & Advocate, Dr. Dan Brookoff
4/15/2011

Fund Established to Commemorate His Important Work

On April 13, 2011, the IC community lost a beloved and compassionate clinician, researcher, and supporter, Daniel Brookoff, MD, PhD.

We’ve Got Guidelines!
3/1/2011

This morning, the American Urological Association (AUA) released the first-ever clinical guidance on interstitial cystitis.

The AUA Clinical Guidelines: Interstitial Cystitis/Bladder Pain Syndrome include:

    • A paper describing consensus from an expert panel on the recommended diagnosis and treatment approaches for IC.
    • An algorithm providing a snapshot of the clinical treatment approach.

The ICA thanks the AUA and the guidelines panel, which included many members of the ICA Medical Advisory Board as well as ICA Executive Director Barbara Gordon.

The ICA encourages patients to print copies of these documents and to give them to ALL of the members of their healthcare teams. The guidelines are available for downloading on the AUA website.

IC on the Airwaves
2/24/2011

For all of those listening to 91.3 FM out of the University of Hartford in Connecticut last weekend—YES, you did hear the announcer say interstitial cystitis! Thanks to Patty Cyr and her husband, WWUH streamed information about IC and the ICA across the airwaves! Learn how to contact radio stations in your area. For more information, contact ICAmail@ICHelp.org.

IC Advocates—You Did It!
2/10/2011

Have you ever wondered if taking the time to write that letter to your Congressional leaders really makes a difference? This week the answer was a definitive YES!

The National Institute on Diabetes and Digestive and Kidney Diseases (NIDDK), one of the National Institutes of Health (NIH), asked researchers to submit grants for the following IC research: Fostering the Development of Interdisciplinary Team Science for the Study of Interstitial Cystitis/Painful Bladder Syndrome.

The call for proposal states that “Despite the ongoing work of the MAPP Research Network and other relevant efforts, the NIDDK recognizes that not all important questions for UCPPS, and more specifically for IC/PBS, are being addressed and some new or important traditional research areas may be understudied by current efforts. In response to these needs, the present research opportunity is designed to promote the development of research teams with diverse expertise for addressing a critical research question focused on IC/PBS.

There’s a link to the research announcement in the funding opportunities posted in the Research section of the website.

Thanks to everyone who wrote letters. Your advocacy efforts really make a difference. You are all IC champions!

Send Valentine’s Day Wishes—And Support the Cause
2/4/2011
Love is in the air! Tell friends and family members that you care by sending an ICA Valentine’s Day tribute eCard. It’s easy and your contribution goes to a great cause—the Interstitial Cystitis Association. Or you can send any of these newly release ecards:

    • Valentine’s Day
    • ICA Update Gift Subscription
    • Healthcare Provider Tribute
    • Membership Gift Subscription
    • Birthday Wishes
    • Special Occasion Gift

Radio Interview with IC Expert Dr. Robert Moldwin
1/25/2011

Voice America Talk Radio Network and the Interstitial Cystitis Association will feature nationally known urologist and author, Dr. Robert M. Moldwin on The Dr Melanie Show radio program on the VoiceAmerica Variety Channel on Thursday, January 27, at 11am Pacific Time. Dr. Moldwin, member of the Interstitial Cystitis Association Medical Advisory Board will discuss diagnosis, treatment options, and current research on IC and pelvic pain syndrome.

IC News from the United Kingdom
1/12/2011
The following stories come from our friends across the pond:

    • Aspire Pharma recently released a new bladder instillation therapy—iAluRil® is composed of Hyaluronic Acid and Chondroitin Sulphate. The instillation is thought to work by creating a temporary replacement of the Glycosaminoglycan or GAG layer, the protective lining in the bladder. For further information check out their website at www.aspirepharma.co.uk.

    • Green Lipped Mussel Extract is being used by some in the UK for IC relief! Coming from New Zealand green mussels, it is thought to reduce IC symptoms by inhibiting inflammation. After freeze drying, omega 3 fatty acids are extracted from the mussels. Some manufacturers add glucosamine to their products for an extra anti-inflammatory effect.

Four Patients Raise IC Awareness Around the Globe!
1/6/2011
Thanks for your courage to talk about IC and your help raising awareness!

    • Catherine Horine shared her IC story in the 2010 National Health Council Global Forum magazine. The National Health Council is a coalition of advocacy groups working to make healthcare better and Catherine’s story helps readers understand the importance of creating a healthcare system that puts the needs of the patient first.

    • Norma Kellam published an article about IC in the Spanish-language newspaper, El nacional de Oklahoma. The article helps get the word out about IC en español. Gracious Norma!

    • Julie Beyer was interviewed on a Christian talk radio program about living with IC and her personal strategies for getting through tough times. She also discussed how journaling and writing books helps her to cope with IC symptoms. Thanks Julie for also helping to get the word out about the ICA on radio!

    • Patty Cyr got the word out about IC on the airwaves. An ICA radio public service announcement (PSA) aired November 14th on WWUH (91.3 FM) out of the University of Hartford in Connecticut with an international audience. Patty initiated this and has volunteered to help instruct others how they too can help spread the word. Learn how to contact radio stations in your area. For more information, contact ICAmail@ICHelp.org.


Great work! Keep the momentum going—Check out www.icaware.org for ways to spread awareness in your community and around the globe!

Dr. Ursula Wesselmann to Serve on Pain Panel
12/16/2010

Interstitial Cystitis Association (ICA) Medical Advisory Board Member Ursula Wesselmann, MD, PhD was selected to serve on an Institute of Medicine (IOM) expert panel tasked with evaluating the current science on pain research, care, and education. This initiative is a result of the national healthcare legislation, known formally as the 2010 Patient Protection and Affordable Care Act, which calls for the National Institutes of Health (NIH) sponsored Institute of Medicine (IOM) Conference on Pain. NIH expanded the scope of that work to include the development of an IOM technical report and recommendations on how to advance pain care, education and research. For people with interstitial cystitis (IC), the IOM report and activities offer hope of further understanding about how to best treat chronic IC pain. There’s more about the scope of this consensus study on the Institute of Medicine’s website.

ichelp.org Receives Seal of Approval
12/16/2010
An independent review of the Interstitial Cystitis Association (ICA) website, www.ichelp.org, found that the site is in full compliance with the Health On the New (HON) Foundation’s quality
This website is certified by Health On the Net Foundation. Click to verify.
This site complies with the HONcode standard for trustworthy health information: verify here.

standards for online medical information. Founded to encourage the dissemination of quality health information for patients and professionals, and to facilitate access to the latest and most relevant medical data, the HON Foundation is a non-governmental organization, internationally known for its pioneering work in the field of health information ethics, notably for the establishment of its code of ethical conduct, the HONcode.


HONcode is the oldest and the most used ethical and trustworthy code for medical and health related information available on the Internet and www.ichelp.org was found to comply with all HONcode standards for trustworthy health information. The HONcode certification is an ethical standard aimed at offering transparent quality health information online.

The Interstitial Cystitis Association is very pleased to be recognized with this re-certification.

Three Women Speak Candidly About Pelvic Pain
12/9/2010

Monday night three young women, Tali, Tamra, and Tess, spoke openly about their struggles with chronic pelvic pain. I Can’t Have Sex, the season premier of MTV’s True Life series raised awareness about three lesser known health conditions—vulvodynia, vaginismus and pelvic floor muscle dysfunction (PFD).

Amitriptyline & Heart Disease
12/2/2010

A study out of London raised concerns about amitriptyline and use of other anti-depressants and increased risks for heart disease. IC patients may be prescribed amitriptyline for pain control; however, the dosage for neuropathic pain is considerably less than prescribed for depression.

These British researchers followed 15,000 patients across 8 years, who were taking antidepressants for a number of health problems including depression, migraines, obsessive compulsive disorder, nerve pain and panic attacks. Given that tricyclic antidepressants are known to increase blood pressure, promote weight gain and increase risk for diabetes, the increased risk for heart disease is not surprising. The authors noted that additional research must be done to further confirm the increased risk and encouraged patients to speak with their healthcare provider before stopping these medicines.

For IC patients who have found these antidepressants helpful for controlling IC symptoms, print this article and share it with your healthcare providers. Discuss your unique risks and benefits. Decide if the benefit of this treatment in controlling IC symptoms outweighs the risk.

FDA Takes Painkiller Darvon Off the Market
11/23/2010

On November 19, 2010 the US Food and Drug Administration (FDA) stopped the sale of products that contain propoxyphene. This removes painkillers darvon and darvocet from the market. The FDA website states safety concerns.

Interstitial Cystitis Uracyst Trials Stopped
11/11/2010

Watson Pharmaceuticals announced that the study investigating Uracyst (sodium chondroitin sulfate solution 2%) as a new treatment for interstitial cystitis (IC) was stopped. The drug failed to meet key efficacy endpoints, meaning when compared to a placebo medicine, Uracyst (Ur0080) did not successfully abate IC symptoms.

The US Food and Drug Administration granted Watson conditional approval of Uracyst in June 2009, allowing the company to conduct a double blind, placebo-controlled, pilot trial of 100 patients at 20 sites around the US. Though the findings are continuing to be reviewed and analyzed, at this time Watson indicated they do not expect to dedicate any additional resources to the product.

Transdermal Fentanyl Recall
11/4/2010

Actavis, a generic drug manufacturer, issued a voluntary recall of 18 lots of their 25 mcg Fentanyl patch. One lot was found to be defective, causing the medicine to release too quickly into the bloodstream. This lot, along with 17 others, has been recalled. According to Actavis, the Food and Drug Administration (FDA) and wholesale and retail pharmacies have been notified.

For a listing of the affected lots, please visit the Actavis website:
http://www.actavis.us/en/Fentanyl_Recall.htm

ICA Welcomes Deborah Lovin
11/4/2010

This week, Deborah Lovin, a passionate advocate for the IC patient and healthcare communities, joined the Interstitial Cystitis Association (ICA) as Manager of Strategic Partnerships. Deborah first became involved with the ICA as an industry representative when she managed a product used to treat IC. In this role, she developed relationships with advocacy groups like the ICA, as well as healthcare professionals involved in IC research and patient care. After leaving that position, Deborah helped the ICA on a part-time basis with communications projects, further honing appreciation for all those affected by IC. She is very excited to join the ICA team on a full-time basis!

Holiday Cards on Sale Now!
11/4/2010

Send good wishes for the Holidays and New Year and help raise funds for interstitial cystitis advocacy, research, and education programs. Spread IC awareness by purchasing your holiday cards from this special collection and a portion of the proceeds from every sale is donated to the Interstitial Cystitis Association!

Custom greeting cards are also available for purchase.

The Time is Now
10/20/2010

Interstitial cystitis (IC) affects more than 4 million people. As the holiday giving season kicks off, please make a donation to the Interstitial Cystitis Association (ICA).

Your $10, $25, $50 contribution today will help us to continue moving forward!

Please help the ICA continue this important work. Please contribute whatever you can afford towards continuing the fight against IC.

Thank you for your continued support.

ICA Office Closed Monday, October 11 for Columbus Day Holiday
10/6/2010
In celebration of the Columbus Day holiday, the Interstitial Cystitis Association (ICA) office will be closed Monday, October 11. Find 24/7 help and support through the ICA social networking community:
Pain Medicines: FDA REMS Comment Period Ends October 19, 2010
10/6/2010

The Interstitial Cystitis Association (ICA) urged the US Food and Drug Association (FDA) to ensure interstitial cystitis patients access to opioid pain medicines. We urged regulators to be thoughtful in implementing new regulations about pain medicine and to provide access to needed pain medicines. It’s not too late. The public comment period for the FDA REMS docket ends October 19, 2010. Send a note to the FDA. Let them know that IC patients need access to pain medicines.

Government Employees Answer Hillary Clinton's CFC Call To Action
9/30/2010

Fall marks the beginning of the Government’s Combined Federal Campaign (CFC). Are you a federal employee who wants to help improve life for people with interstitial cystitis (IC)? Please designate the Interstitial Cystitis Association (ICA) as your 2011 charity, we’re CFC# 10578.

Everyone Celebrate by Joining the IC Facebook Causes Movement
9/30/2010
Our sincere thanks to everyone who made a donation through Facebook Causes! We are also grateful for the Facebook Causes Birthday Wish donations. Your gifts help us to provide support for IC patients as well as raise awareness and fund research. If you haven’t already done so, please join the IC Facebook Causes Movement!


Not familiar with Facebook causes and birthday wishes? Here’s the scoop!

ICA Update Recognized for Excellence
9/8/2010

Interstitial Cystitis Association receives National Health Information Award! The ICA received honors for a special issue of its ICA Update–a quarterly magazine focused on current IC research, treatment, and lifestyle issues.

September is Pain Awareness Month
9/8/2010

Join the movement to help ensure that all IC patients have the right to timely, effective pain management options. Be an IC advocate! This September, during Pain Awareness Month (PAM), connect with Americans from around the country and help bring positive change to the management of pain.

Support the Cause: Join the ICA eBay IC Patient Art Auction in Process Now!
8/19/2010

Our thanks to Sharon Casey and Jordan Avery for contributing their work to the "When Pain Is a Monster" article in the Winter 2010 issue of the ICA Update and for donating these artworks for an ICA fundraising auction.

Voices of IC Echo Across the Web
8/11/2010

About 200 patients, families, friends, and healthcare providers gathered virtually for a free educational webcast held the evening of Tuesday, August 10. Panel presenters included Robert Moldwin, MD, Matt Rosenberg, MD, and patient advocates Linda Salin, Teresa McCoy, and Kevin Noa.

Update on Federal IC Funding
8/5/2010

Good news. Thanks to everyone's advocacy and letter writing efforts, the Senate has included the requested IC federal funding at the $660,000 level in the fiscal year 2011. However, the process isn’t quite over yet. For the next step, the final budget goes to “committee” to resolve the differences between the House budget bill and the Senate budget bill. During this time, we will be asking all of you to once again remind your government representatives why this funding is so important. For now, if you wrote to your Senators, please send a quick thank you note letting them know how grateful you are that the IC-dedicated funding was restored in the fiscal year 2011 budget. If you did not get to write to your representatives in the last few weeks, don’t worry—it is never too late. Send a note today with your story and how important it is ensure dedicated IC funding.

Additional good news is that funding for the National Institutes of Health has been increased to the level of $32 billion, which is a $1 billion increase over the fiscal year 2010 budget. Congratulations to the entire IC community for your tremendous advocacy effort!

Take Me Out to the Ballgame…for IC
8/5/2010

Not even a torrential downpour could dissuade a group of committed advocates from raising awareness about IC at the July 10 Camden Riversharks baseball game in Camden, New Jersey. Event organizer Lauren Snyder, a 29-year old IC patient and special needs teacher, watched the skies anxiously as heavy thunderstorms pounded the area.

The Bladder Gets Recognition on the Hill
7/28/2010

The Society for Women’s Health Research (SWHR) brought together a group of passionate women’s health and urology advocates for a briefing titled “The Bladder Matters: What Women Need to Know” on Thursday, July 15.

ICA Joins Other Groups in Thanking Congress for Taking Big Step to Address Health Disparities
7/28/2010

Congressional representatives, legislative staff, and patient advocates gathered this past Tuesday, July 20, to celebrate a historic event—the elevation of the National Center on Minority Health and Health Disparities to an Institute at the National Institutes of Health (NIH).

Save Federal Funding for IC—Contact Both of Your Senators Today
7/20/2010

We need your help to protect critical federal programs benefiting the IC community.

Continued funding is in serious jeopardy. The U.S. Senate is set to mark up its fiscal year 2011 spending bill. This bill funds NIH research studies and the CDC IC Education and Awareness Program.

Coming soon: ICA eBay August Art Auction
7/15/2010

Our thanks to Sharon Casey and Jordan Avery for contributing their work to the “When Pain Is a Monster” article in the Winter 2010 issue of the ICA Updateand for donating these works for an ICA fundraising auction.

Be on the lookout for more details about the first ICA eBay auction, which will be held for one-week only—starting August 18 and ending August 25.

Join the fun, help the cause, get a tax write-off, and enjoy artwork created by two accomplished artists living with IC!

ICA Board Chair Retires, New Co-Chairs Elected and New Treasurer Take Reigns
7/15/2010

Minna Schrag, who has played a pivotal role in guiding the ICA for the past 6 years, retired from her position as Board Chair. Long-time Board members Eric and Barbara Zarnikow have been elected to succeed her as Co-chairs. "I am thrilled by how strong and effective the ICA is, with expert leadership from Barbara Gordon, the terrific staff, and the dedicated Board.
Read More

New Website: Rolling Out Healthcare Reform
7/15/2010

A new online portal, a place to find insurance options in your state, www.HealthCare.gov, went live this week. Featuring information that used to be difficult to find, this new resource makes it easier for you to shop for insurance options and find out about benefits resulting from the new healthcare law.

Safe Opioid Prescribing: FREE Webinar for Healthcare Providers
7/7/2010

The American Pain Foundation is hosting a free webinar for healthcare professionals on unintended overdose of opioid prescription medicines. Agenda items include information on deaths associated with overdose from prescription opioids, practices for safe opioid prescribing, and tools to help integrate opioid prescribing guidelines into patient care. This one-hour, webinar will be aired five times. Learn more at www.safeprescribing.com, or view the webinar invitation.

ICA Closed Monday July 5th – icaOnline open 24/7
6/30/2010

The ICA office will be closed Monday, July 5th in celebration of the Independence Day holiday. ICA online resources are open 24/7: 

Planning on attending a red, white and blue shindig? Here’s ten tips from Julie Beyer, MA, RD, about enjoying holiday social gatherings.

Helping Docs Help You
6/30/2010

Want to help physicians better understand how to help you become an educated healthcare consumer? Ortho Women's Health & Urology™ is looking for IC patients who are willing to provide anonymous feedback on that topic. The findings will be used to help educate physicians about how to have more effective discussions about IC with their patients.

PS: The Spring 2010 issue of the ICA Update offers lots of great information on this topic.

Keep up to date with the ICA e-Newswire!
6/23/2010

Keep up to date with the latest in IC research and treatment advances, learn about upcoming IC-related events worldwide, and follow how the ICA is working for you with the ICA e-Newswire. Each Thursday the ICA e-Newswire brings IC headlines to your inbox. It's free, so sign up today! Check out this week's e-Newswire!

On the Tube: ICA MAB Member Bob Evans, MD
6/16/2010

ICA Medical Advisory Board member, Robert Evans, MD, discussed IC on Winston-Salem, NC’s WXII Channel 12 noon news last week. As the noon health guest, Dr. Evans reviewed the symptoms of IC, common misdiagnoses in men and women, effects of IC on quality of life, and IC treatment options. He emphasized the importance of both patient and provider education in successful diagnosis and treatment. And, noted that if a particular therapy doesn’t reduce IC symptoms, doctors need to reevaluate with the aim of achieving more successful symptom management and improved quality of life for patients.

Pesticide Levels in Fruits & Veggies
6/10/2010

Trying to get your five-a-day, but concerned about potential pesticides in fruits and veggies? If so, we’ve found a wonderful new resource for you! Check out the 2010 Shopper’s Guide to Pesticides from the Environmental Working Group (EWG), a nonprofit organization educating the public about health and environmental threats.

Opioid Prescribing Regulations Coming in Summer 2010
5/12/2010

During last week’s American Pain Society annual meeting, the ICA learned that the US Food and Drug Administration's (FDA's) opioid risk evaluation and mitigation strategies (REMS) are nearing completion and could be ready as early as this summer.

ICA, Membership, and You
5/10/2010

We want to know how people who read the ICA Update, visit ICA website, or use ICA services feel about membership with charitable organizations, such as the ICA. Your feedback on this short, 10-minute survey will help us make decisions about the ICA's future. We encourage everyone to respond - both members and nonmembers. Visit www.ichelp.org/PollsSurveys and complete the survey that best describes you: member, former member, nonmember (never been a member). Thank you for helping to make the ICA better.

Show Mom or Your “Surrogate Mom” You Love Her with a NWHW e-Card!
5/5/2010

National Women’s Health Week (NWHW) kicks off this Sunday, May 9, Mother’s Day. Show your mother, grandmother, daughter, sister, or friend that their health is important to you:

  • Send the women in your life a free NWHW e-Card.
  • Ask them to pledge to put their health first, visit their doctor for a check-up, and celebrate living a healthier life.

Visit the NWHW website and choose the card you want to send. Embrace the future and encourage your family and friends to live healthier lives together!

Marathon Man: This Pain Stops, But Theirs Doesn’t, Will You Help?
4/28/2010

Marathon runner, Joe Daczko, of Mantua, Ohio, is recognizable at most races. In the sea of 25,000 runners at the Boston Marathon on April 19, his visibility was no exception; his bright orange t-shirt reading www.ichelp.org—THIS PAIN STOPS, BUT THEIRS DOESN’T, WILL YOU HELP—stands out in the crowd.

What did you do....?
4/21/2010
...after reading the Winter 2010 issue of the ICA Update? Did you learn about a pain management technique that interested you? Did you decide to talk with your healthcare provider about your pain management plan? Please let us know how you plan to use the information from this issue or how you ended up using it by completing the Winter 2010 ICA Update Feedback Survey. Takes 5 minutes to complete.


As part of the survey you will also be able to tell us what YOU think might be good to include in an upcoming edition of the Update. We know you have ideas, so let them fly when you complete this survey!

How do you feel about Membership: ICA Needs to Know!!
4/21/2010

It's that time again, yep, an ICA User Survey. This time about membership, and if you're not a member of the ICA, no worries.  We have a membership survey for you too.  We want to know how you feel about membership, whether with us or any charity organization like ourselves. Just click on the link below that best describes your "membership status" with the ICA and fill it out. The survey takes 5 minutes to complete, but your answers will be infinitely valuable to us.


Thanks in advance for your help!

Attention Nashville Patients: Want to Tell Your Story?
4/19/2010

Calling all IC patients living in the Nashville area: the ICA is looking for 2 to 3 people interested in telling their stories about living with IC to local newspapers in concert with the patient forum in Nashville, TN on June 5. ICA staff will work with interested patients to prepare their stories and connect with the media. Email icamail@ichelp.org for more information. Participants must attend the forum to be eligible to participate in the media interviews.

Volunteers Needed: Patient Forum June 5, Nashville, TN
4/19/2010

A small number of volunteers are needed to assist with registration and set-up for the event. All volunteers will get a complimentary registration for the patient forum. If you are interested in volunteering for the event, please email icamail@ichelp.org.

In Case You Missed It: U of South Florida IC Nutrition Survey
4/14/2010

When the ICA originally posted this request in January 2009, the survey was flooded by IC patients eager to help and could not handle the volume of responses and crashed. For those of you who gave up before in frustration, USF reports the online survey tool is now working well. USF is asking people with IC, 18 years or older, to participate in the online survey. The goal of the study is to learn more about the impact of diet on IC. Please allow 30 minutes to complete the survey. It is important research, but the tool also requires patience!

Didn't Make it to the Hill Walk? Then Make a Hometown Visit
4/12/2010

If you didn't make it to Washington for the ICA Capitol Hill walk, don't worry. You can still make sure your voice is heard by visiting your Congressional representatives at their hometown offices (in your own town) and letting them know how important funding for IC is. And visiting your representatives' hometown offices is easier than you might think.Visit www.congress.org to find out where your representatives' local offices are and use our sample letter to get started thinking about what you might say. Contact icamail@ichelp.org if you're interested in making a hometown visit and we'll send you tips about setting up an appointment, as well as talking points for  your visit. 

MTV Looking for Young Women for "True Life" Show on Painful Sex
3/31/2010

Want to be on TV and raise awareness for IC at the same time?! Now's your chance! MTV has contacted us to help them find young women, aged 18-29, to be on a True Life episode tentatively called "True Life: I Can't Have Sex". If you are interested in learning more about casting for the show or if you have any other questions, contact the production company Punched in the Head Productions at tlcanthavesex@gmail.com. View the casting flyer here. Let us know if you are going to contact them so we can make sure to contact them about you as well. Good luck!!

ICA Capitol Hill Walk - This Week!
3/23/2010

IC patients, as well as ICA staff and board members, will gather in Washington, DC this week for the 2010 ICA Capitol Hill Walk. This event is designed to bring members of our community together to educate Congress about IC and this year over 20 people will be traveling from all over the country to be part of it. We'll make sure Congress knows how important it is to raise awareness about this disease and that it is critical to ensure that funding for IC research and awareness activities is included in the federal budget.

If you can't come to Washington you can still make sure your voice is heard this week by writing to your Congressional representatives and letting them know how important funding for IC is. Visit www.congress.org to find out how to contact your representatives and use our sample letter to get started. This week the voices of our community WILL be heard!

What do Oprah, Suzie Orman and ICA Board Member Phyllis Greenberger Have in Common?
3/10/2010

Long-time ICA friend and board member Phyllis Greenberger was recognized this month by Woman’s Day as one of fifty women who are “Changing the World.” As CEO of the Society for Women’s Health Research, Greenberger was recognized for her advocacy work yielding more medical research on women’s health issues. Greenberger shares this honor with many other well-known women’s health advocates, including Oprah Winfrey, Hilary Clinton, and Katie Couric. See the full list in Woman’s Day.

5 Minutes for IC Awareness: Check out the new “How to Be an Advocate” page and take action!
3/10/2010

Want to know how you can get more involved with the ICA? Want to learn how you can be an advocate for IC? Check out the new “How to Be an Advocate” section of the website to learn how you can start advocating for IC in Washington, in your hometown, or without ever leaving your house!
Read More

New Confident Choices Book from Diet Bytes’ Julie Beyer, MA, RD
3/3/2010

The ICA is happy to announce the upcoming release of Interstitial Cystitis: A Guide for Nutrition Educators (Confident Choices® Book), written by registered dietitian and IC patient Julie Beyer, MA, RD. This book is the first publication of its kind, written for registered dietitians and nurses who provide diet counseling to bladder disease patients. Julie is the author of the monthly Diet Bytes column in the ICA e-Newswire. Learn more about this exciting new book.

5 Minutes for IC: Raising IC Awareness in 5 Minutes or Less
2/17/2010

How can you raise IC awareness this week in less than 5 minutes? Send a quick note to Washington Post Health Blogger Jennifer LaRue Huget about IC and why it’s important to get the word out about it. Mention these statistics to really make your point:

  • More than 4 million men, women and children in the US have interstitial cystitis (IC)
  • Between 3 to 8 million women and 1 to 4 million men report symptoms of IC
  • Estimating conservatively, one out of 77 people have IC. Or, if further research supports the higher prevalence rate, that’s one out of every 28 people
  • IC is more common than breast cancer, autism, and Alzheimer’s disease combined—have you heard of it?
  • Be sure to include our website address (www.ichelp.org) in your note

 

Haven’t received the ICA Update in a while? Verify your Membership Status.
2/16/2010

The ICA Update, a quarterly magazine filled with IC news, spotlight stories, and exclusive IC healthcare provider interviews, is a benefit made available exclusively to ICA members or contributors who give $45 or more per year. If you haven’t received your copy of the ICA Update in a while, but think that you should have, log on to the ICA website to verify your membership status. If your membership is out of date, renew your membership or join the ICA online. Working together we will Conquer IC and Change Lives!

Mother Nature's IC Flare
2/11/2010

The ICA offices have been closed this week due to extreme weather. With two blizzards crippling the region, ICA staff in the DC area, who have been fortunate to still have power, are doing what they can to respond to emails and phone calls remotely. The US Post Office stopped mail delivery and fulfillment of orders is delayed. Thanks for everyone's understanding as we try to keep operations functioning as mother nature appears to be having an IC flare!

5 Minutes for IC: Raising IC Awareness in 5 Minutes or Less
2/11/2010

How can you raise IC awareness this week in less than 5 minutes? Invite 5 of your friends to become ICA Facebook Fans. Include a personal message in the invitation and tell them why the ICA is important to you.

ICA Urges NCCAM to Designate Funds for IC & CAM Research
2/11/2010

On February 5, 2010, the NCCAM Advisory Board held its quarterly meeting in Bethesda, MD. The advisory board outlined three proposed areas of high priority for upcoming research proposals: trials investigating specific natural products; mind/body techniques for encouraging healthy eating, physical activity, and weight maintenance; and CAM therapies for chronic back pain.
Read More

ICA Medical Advisory Board Member, David Burks, MD, Leaves Henry Ford for Private Practice
1/19/2010
Urologist and IC expert, David Burks, MD, left Henry Ford Health Systems and set up private practice in Michigan. Good news is that he is still seeing IC patients! Here’s his new office information:
David Burks, MD
18100 Oakwood Blvd
Dearborn, MI 48124
313-586-0163
FDA Recall on Some Bottles of Motrin, Tylenol, Benadryl, and Rolaids
1/19/2010

Ortho McNeil announced a voluntarily recall of certain lots of over-the-counter (OTC) products, including Motrin, Tylenol, Benadryl, and Rolaids. The FDA posted a list of products and affected product lot numbers on their Safety Recalls website. Check the side of the bottle label for the product lot number.
Read More

En español … the ICA Launches Expanded Spanish Language Section of Website
1/12/2010

An international audience accesses the ICA website on a daily basis. Visitors from 190 countries and territories seek online information in diverse languages. In acknowledgement of this international following, we recently updated and expanded the health information offered in Spanish. Housed in the “About IC” section of the website, En español, offers an extensive collection of information about IC including symptoms, diagnosis, treatment, and living with IC. Given the popularity of nutrition information, translations also include information about eating with IC, dietary supplements, and the IC diet food list. Translation services were made possible through a grant provided by the Medtronic Foundation. The ICA website also includes information about IC in seven other languages: English, Chinese (Simplified), Chinese (Traditional), German, Spanish, French, Italian, and Japanese.
Visit En español
Visit Other Languages

Hmm. Thanks for the Gift Card, Is it for My Health Insurance Plan?
1/12/2010
The gift card concept continues to expand, as some health insurance plans offer cards that can be used to pay bills and insurance premiums or cover the costs of specific services at eye doctors and dentist offices. What a cool gift idea for an IC patient!
Read More

A New Look for a New Year @ www.ichelp.org
1/7/2010

Over the past year the ICA updated online content, expanded the website, and established an online social network. And now, with grant funding from the Centers for Disease Control and Prevention, the ICA launched a fresh look and improved navigation on www.ichelp.org!
Read More

Elmiron Patent up in 2010, Ortho Plans to Continue to Sell
1/7/2010

The patent for pentosan polysulfate sodium (Elmiron), the only oral medicine that is FDA approved for treating the pain and discomfort of IC, ends this year. As 2009 neared to an end, this reality coupled with a production glitch fueled concerns that Ortho McNeil, the manufacturer of Elmiron, might no longer market the medicine.
Read More

Both House and Senate Healthcare Reform Bills Offer Promise
1/6/2010

As a member of the National Health Council, the ICA educated Congress on the special healthcare issues of people with chronic conditions like IC and the importance of incorporating five key principles into a national healthcare system...
Read More.

Dr. Bob Evans Relocates to Wake Forest University Baptist Medical Center
1/6/2010

Bob Evans, MD, IC specialist, ICA board member, and favorite doctor has joined the Department of Urology at Wake Forest University Baptist Medical Center--and his new practice is up and running! His new contact information is: Robert J. Evans MD, 140 Charlois Boulevard, Winston Salem, NC  27103, (336) 716-4131. 
Read More

Dr. Barbara Shorter Joins Faculty of The Smith Institute for Urology
1/6/2010

Barbara Shorter, EdD, RD, CDN, Associate Professor of Nutrition and Director of the undergraduate Nutrition Program at Long Island University and a member of the ICA Medical Advisory Board, had been volunteering her time every other Friday to counsel IC patients. In December, Dr. Shorter joined The Smith Institute faculty! She'll be seeing interstitial cystitis patients and also giving expert advice on the nutritional aspects of other urological conditions.
Read More.

New Website Login Issues
1/5/2010

If you received an email with a temporary username and password for the new website and are unable to log in with it, we are aware of the problem and are working to correct it as soon as possible.  Once we have solved the problem we will let you know via email how you will be able to access your profile on the website.

Thank you for your patience during this transition.

Happy New Year from the ICA
12/31/2009

Wishing you a happy, healthy, and joyous 2010.

New FDA Safe Drug Initiative
12/18/2009

Millions of people are harmed every year from inappropriate medication use. Many injuries occur as a result of incomplete access to information about a drug, a patient, or the patient’s condition. 

In order to address this the FDA has created a Safe Use Initiative - a program aimed at reducing the likelihood of preventable harm, injury, or accidental intoxication from medication use. As a part of this program, the FDA will be creating posters and other items to help get the word out about safe medication use through pharmacies, doctors' offices, hospitals, and related organizations. Learn more.

24 Hour IC Giving Challenge
12/16/2009
Help raise $5,000 for IC research. And you won't have to give a cent!
Learn More

Be an Inspiration to Others With IC
12/11/2009

Do you have a story about IC to share? Do you want to share your story of hope and success and be an inspiration to others? Well now’s your chance.

Public Comment Sought by January 11, 2010
12/9/2009
Review of Social Security Disability Ruling: The SSA Needs to Hear From You!

The Social Security Administration (SSA) is reviewing the IC disability ruling. They announced in the Federal Register that they published a call for public opinion on the medical criteria for evaluating genitourinary impairments, which includes IC. The Advance Notices of Proposed Rulemaking (ANPRMs) arm of SSA seeks public comments by January 11, 2010. Or if you prefer, email your comments to the ICA at icamail@ichelp.org by January 5, 2010, and we will include them with the public comment we submit.

A Change is Coming at the ICA!!
11/30/2009

Over the past year the ICA has been updating educational materials and information, expanding the website, creating an online social network, and refining its vision for the future.
Read More

Got a Giving Spirit? Gather ’Round the Table!
11/30/2009
It’s the season of giving, but some years, it’s tough. Even in a lean year, you could give a great present if you had a big family and yours was one that pooled holiday gift giving dollars to give one big, wished-for present to each member.
Read More

ICA Leaders Encourage NIDDK Director to Expand IC Research Portfolio
11/24/2009
Executive Director Barbara Gordon and Medical Advisory Board member Daniel Brookoff, MD, PhD, met with NIDDK Director, Griffin Rodgers, MD, and his senior leadership team on Wednesday, November 18.
Read More

New Pelvic Physiotherapy Website
11/19/2009
Maeve Whelan, a physical therapist and instructor in Dublin, Ireland, has recently developed a new website www.pelvicphysiotherapy.com.
Read More

Medication Questions on the Go?
11/19/2009
Do you ever find yourself with a question about your or your patient’s medicines? Well, there's an app for that. Read More

Calling All Artists!
11/6/2009
The Kakkis EveryLife Foundation invites artists who have been affected by rare diseases to participate in the first annual EveryLife Art Contest.
Read More

National Nurse Practitioner Week, November 8-14, 200
11/6/2009
Next week is National Nurse Practitioner Week, November 8-14, 2009.
Read More

Call to Action: Access to Opioids-the FDA Needs to Hear From You!
11/5/2009
The FDA has reopened the public comment period for developing Risk Evaluation and Mitigation Strategies (REMS) that would regulate opioid drug availability.
Read More

The FDA wants to know: How are you disposing of your unused drugs?
10/29/2009
The FDA recently launched a website for patients with information on how to dispose of certain drugs, many of which are commonly prescribed for IC.
Read More

It's IC Awareness Week!
10/20/2009
October 19-23 is the 2nd annual IC Awareness Week, dedicated to raising awareness of IC and spreading the word about IC research and treatment.
Read More

Help the ICA win $50,000 from Facebook!!
10/16/2009
The ICA is entered in America's Giving Challenge, which gives us a chance to win $50,000!
Read More

Food Choices Offer First Line of Defense for Taming Painful Bladders
9/28/2009
Many people with bladder conditions such as interstitial cystitis or IC (also known as painful bladder syndrome and bladder pain syndrome) notice that certain foods appear to worsen symptoms of urgency, frequency, and pain.
Read More

Online Pain Advocacy Toolkit Now Available
9/25/2009
Healthcare professionals and patient advocates working to alleviate suffering and improve the care of the millions of Americans living with undertreated pain now have a new resource to help them create greater understanding of this serious national health problem.
Read More

New NIH Director Hosts Town Hall Meeting for Constituents
9/14/2009
The newly appointed director of NIH, Francis Collins, MD, PhD, held a town hall meeting for non-profit and health organizations this past Wednesday, September 9 to discuss some of his plans for NIH over the next several years.
Read More

National Invisible Chronic Illness Awareness Week, September 14-20, 2009
9/14/2009
National Invisible Chronic Illness Awareness Week virtual conference is now underway.
Read More

The 2nd Annual Women in Pain Conference
9/10/2009
Don’t miss the 2nd Annual Women in Pain Conference taking place September 18, 2009 in Los Angeles, CA.
Read More

It's PAINWeek '09
9/10/2009
PAINWeek ’09 (the national conference on pain) is now underway in Las Vegas, NV.
Read More

Dr. Lee Nyberg, NIDDK Urology Director, Retiring in September 2009
9/10/2009
Leroy M. Nyberg, MD, PhD, Urology Director, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), National Institutes of Health (NIH) is retiring. As the ICA's liaison to the NIDDK, for the past 20 years, Dr. Nyberg helped us better understand the inner workings of NIH and kept us apprised about NIDDK research priorities.
Read More

Raising IC Awareness
9/10/2009
During August, some of the major airways discussed IC and the challenges of living with chronic pelvic pain.
Read More

Pain Month Resources: New APF Website, CME Webcast on Women in Pain
8/27/2009
September is Pain Awareness Month -- The American Pain Foundation offers new online resource, For Grace to host webcast.
Read More

Snapshot of IC News
7/24/2009
During the past month, IC made the news in local papers as well as scientific news digests.
Read More

APF News: Patent Pending for New Diagnostic Test
7/24/2009
A urine test to diagnose IC by has been developed by Sonia L. Planey, PhD, and her team at The Commonwealth Medical College in Scranton, Pennsylvania.
Read More

ICA Appoints Dr. Barbara Shorter to Medical Advisory Board
7/23/2009
Barbara Shorter, EdD, RD, CDN, Associate Professor of Nutrition and former Director of the Undergraduate Nutrition Program at Long Island University, has been named to the Medical Advisory Board of the Interstitial Cystitis Association (ICA).
Read More

ICA Appoints Attorney Joshua Stein to Board
7/13/2009
Joshua Stein, Special Counsel and Co-Chair of the Accessibility and Accommodations Practice Group at Proskauer Rose LLP, has been named to the board of the ICA.
Read More

Dr. Clauw Joins ICA Medical Advisory Board
6/3/2009
Dr. Daniel Clauw, director of the Chronic Pain and Fatigue Research Center at the University of Michigan, has been named to the Medical Advisory Board of the ICA.
Read More

Patient Advocacy Organizations United on Health Care Reform
6/2/2009
The ICA is one of 48 national patient organizations calling on President Obama and members of Congress to enact health care reform legislation that guarantees effective and affordable health and long-term care coverage for all Americans.
Read More

Prevalence of IC in US Much Larger than Previously Believed
5/12/2009
Three to 8 million women in the United States may have interstitial cystitis (IC). This newly released prevalence number, presented at the 2009 American Urologic Association Annual Meeting in Chicago, represents about 3 to 6 percent of all U.S. women.
Read More

IC to Debut on The Doctors
4/8/2009
Interstitial cystitis (IC) is scheduled to be the topic of the Thursday, April 16 episode of The Doctors, a popular daily television program that offers expert healthcare advice.
Read More

Urology Times Covers Controversial IC and Abuse Issue
4/7/2009
The April 1, 2009 edition of Urology Times tackles the controversial topic of abuse and its possible connection to interstitial cystitis.
Read More