ICA eNews January 26, 2018
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…
Top IC Stories:
- IC and Medications Survey
- IC Awareness Video on Social Media
- IC & Relationships Webinar Now on ICA’s YouTube Channel
- Request for Nominations of Members for the Clinical Trials Transformation Initiative/Food and Drug Administration Patient Engagement Collaborative
- Study Seeking Men and Women Who Suffer from Urologic Chronic Pelvic Pain
Raising IC Awareness and Supporting the Cause
“My name is Erika Lyn MacTinger. I have had interstitial cystitis since 1998, but it wasn’t until 2000 that I was diagnosed. I’m a 36-year-old woman, but started having symptoms of interstitial cystitis when I was 17. Interstitial cystitis (called IC for short) is a dreadful disease, but the process of elimination is grueling. When I was 17 I started to notice I had urinary frequency. It wasn’t until I was 19 that I realized something was really wrong. I was having symptoms of feeling like I had a urinary tract infection (otherwise known as a uti) and it seemed to be getting worse…”
Read Erika’s full story at http://support.ichelp.org/site/TR/ICAGivingPages/General?px=1066108&pg=personal&fr_id=1050
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, and emotions.
ICA Facebook Page “Post of the Week”
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 who treats patients with IC and wants 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.
- Clinical Psychologist – Cincinnati, OH
- Obstetrics, Gynecology – LaGrange, GA
- Psychotherapist – Santa Fe, NM
- Physical Therapist/Therapeutic Pain Specialist – Burnsville, MN
- Physician Assistant – Worthington, OH
ICA is pleased to provide you with a list of IC, painful bladder syndrome (PBS), and chronic pelvic pain support groups in the United States and around the world. Go to www.ichelp.org/us-support-groups to log in and search for a support group in your area.
- Phone and Email Support – Rhode Island
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 firstname.lastname@example.org 3-4 weeks prior to the meeting date.
Revised Friday, January 26th, 2018