ICA eNews September 23, 2016
Interstitial Cystitis (IC) & Chronic Pelvic Pain News
Thanks to everyone for their very generous donations to the ICA. We are so very grateful and privileged to work on behalf of such a tremendous community. Please keep them coming and we will continue marching on…
- The Summer 2016 ICA Update Now Available Online to Eligible Donors*
- Federal Employees – IC Charity in Combined Federal Campaign
- Reserve Your Copy of The Interstitial Cystitis Solution!
- Support “12 Miles for 12 Million with IC”
- New Research Study for IC/BPS May be for You
- Heavy Periods with Fibroids? Uterine Fibroids Study Seeks Participants
The Latest in IC Research:
- Researchers Pinpoint Two Inflammation-Related Genes Potentially Implicated in IC/BPS
- New Guide Helps Establish Common Language on IC and Other Pelvic Pain Syndromes
- Patients With Sjogren’s Syndrome May Also Have IC, Researchers Say
- Bladder Tissue Study Reveals Key Differences Between Hunner IC and Non-Hunner IC
- Brain Study Provides Insights on How Women With IC Process Bladder Sensations
- Women With IC/BPS Want Doctors Who Offer Education, Choices, and Hope
- Is Botulinum Toxin the Best Intravesical Treatment for IC?
- Hyaluronic Acid Treatments May Improve Symptoms and Quality of Life
Navigating Disability – A Must Have ICA Update
Want to increase your chances of having a successful disability claim? Here’s the cover for the Summer 2016 issue of the ICA Update that you DON’T want to miss! If you have ever contemplated applying for disability, you NEED a copy of this issue. Luckily, if you make a donation commitment of $50 or more you will have immediate online access to this issue.
If it’s easier for you to make your donation over time, consider joining ICA’s Angel Society and make a monthly gift today of $10, $20, $30, or more. By making a regular monthly donation, you’ll obtain your halo and join others in ICA’s Angel Society. Consider saving a few dollars by making your favorite specialty drink at home, renting a movie rather than going to see one, or fixing yourself a nice dinner at home rather than eating out and redirect those savings each month to ICA. Every gift matters and the convenience of monthly giving multiplies your impact for so many. Your credit card will be charged the amount you designate on the same date each month. Your once-a-month generosity will work every day to ensure early diagnosis and optimal care with dignity for people affected by IC.
In this issue:
- ICA News
- Navigating Disability
- Doctors, IC & Disability
- Working with IC
- Doctors Forum: PT as Part of the IC Solution
- Disability, Not Identity
Hot Topics from ICA’s Online Support Community
ICA’s Online Support Community is a place of peace, hope, and support and provides comfort for patients, family members, friends, and healthcare professionals in search of better understanding the impact of IC. Below is a list of some current hot topics. Join the growing ICA Online Support Community, where you can be connected to thousands of other people experiencing similar symptoms, situations, experiences, and emotions.
ICA Facebook Page “Post of the Week”
An IC patient posted, “I was just told I have IC. I have no idea how to deal with it. I am in a lot of pain. Can anyone explain things to me?” Being newly diagnosed with IC can be overwhelming and very scary. Luckily, ICA has a Newly Diagnosed Toolkit to help put your mind at ease. Read the responses to her post by joining ICA’s Facebook community. With over 30,000 followers currently using this Facebook community, support is just a click away.
ICA Healthcare Provider Registry
For many people with interstitial cystitis (IC), an effective treatment plan requires a team approach, including urologists and other physicians, nurse practitioners, physical therapists, dietitians, and counselors. The ICA Healthcare Provider Registry includes clinicians who have agreed to be a referral source for IC patients. Any registered user of www.ichelp.org has access to this tool. Do you know of other healthcare providers who treat IC patients? Are you a healthcare provider that treats patients with IC and want to be included in the ICA’s Healthcare Provider Registry? Email your name, suffix, specialty, practice name, address, phone number, and website URL to ICAmail@ichelp.org with your request to be included in the ICA Healthcare Provider Registry.
- Physical Therapy – Nashua, NH
- Gynecology – Richland, WA
- Gynecology – St. Petersburg, FL
IC & Chronic Pain Events
- For Grace’s 9th Annual Women In Pain Conference – September 23
- Pelvic Health 101
- Pelvic Pain Symposium – September 29
- Support Group – Syracuse, NY – October 24
- Support Group – Miami, FL – November 12
- Phone Support Only – Dedham, MA
- Phone Support Only – Springfield, VA
Do you run an IC support group? If so, please share your information with us so we can post it on the ICA Support Group page. Want to publicize your next group meeting? Please email your information to email@example.com 3-4 weeks prior to the meeting date.
ICA Quick Tip:
Have you ever wondered why there are not more IC treatments on the market? Part of the reason is economic. Even though ICA has made great strides the last 30 years in education and awareness, the medical community still thinks of IC as a relatively “rare” condition. Also, the process of getting a new drug approved is very complex. Click here to read more about the FDA approval process.
Revised Wednesday, September 21st, 2016