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Endometriosis Blog: Spotlight On The Interstitial Cystitis Association!!

Since so many readers of this blog have interstitial cystitis as well as endometriosis and since the illnesses have been correlated in studies, I would like to spend some time today on interstitial cystitis.

Founded in 1984, the Interstitial Cystitis Association (ICA) is the authoritative source of interstitial cystitis (IC) information in the United States.

The ICA:

+ Provides the most comprehensive & up-to-date information on IC

+ Offers IC patients, their families, and friends support

+ Educates the medical community and the public about IC

+ Represents patients and advocates for research funding

+ Provides pilot research funding to find effective treatments and a cure for IC

Since I'm on the email list for The Interstitial Cystitis Association, I receive wonderful updates on interstitial cystitis on a regular basis. The one I just received, however, is special enough to warrant some extra attention. It is full of information on what's happening in the interstitial cystitis world.

I'll include the link to it in a moment but first I'd like to explain a bit about my personal experience as an interstitial cystitis patient. As an interstitial cystitis patient... I know firsthand the unbearable pain it can cause! I also know that it's often misdiagnosed or under-diagnosed. (It took 12 years and 3 urologists telling me I didn't have interstitial cystitis for me to finally find a pelvic pain specialist who said, "you definitely do have IC"!)

The interstitial cystitis treatment regimen he has me use isn't always super-convenient but it is well worth the effort because it really reduces the severity of my symptoms significantly!! (In addition to taking an oral prescription that reduces my symptoms, I self-catheterize at home to administer what's called a 'bladder instillation'. Essentially, the medications (there are two of them) that are instilled into my bladder (temporarily) are helpful for me for controlling my symptoms (in combination with the oral medication therapy).

Annual Report of The International Cystitis Association: A Year of Transformation


In this report, you'll hear that there has been a "changing of the guard" at ICA:

Vicki Ratner stepped down and the ICA welcomed a new Executive Director. After almost 25 years as the ICA’s guiding force, Vicki Ratner, MD, stepped down from her positions as ICA President and Chief Medical Officer. The ICA is profoundly grateful to Dr. Ratner for her tireless efforts on behalf of IC patients worldwide. Her work has had direct impact on the quality of life for all people with interstitial cystitis.

Barbara Gordon, MBA, RD, is the new ICA Executive Director. Drawing upon a wide range of healthcare and managerial experience, as well as a deep understanding of the special challenges confronting people who suffer from chronic diseases, Gordon fully embraces the goal of the ICA to give hope to countless interstitial cystitis patients around the world.

Several themes emerged in the International Cystitis Association's report.

These are some of the words they used regarding the past year for ICA: transforming, embracing, advocating, increasing awareness, empowering, appreciating, ensuring...

Research programs---

Some key points made in the research report cited in the above link include:

+ Research confirmed that IC doesn't travel alone, and that patients often have other problems such as irritable bowel syndrome and fibromyalgia.

+ Researchers explored the cost of IC and found it to be much higher than that of many other chronic illnesses such as peripheral neuropathy, low back pain, fibromyalgia, or rheumatoid arthritis.

+ Many innovative treatments for IC were further developed this year. Oral medications, bladder instillations, external and internal stimulator devices, and hands-on interventions advanced along the pipeline, all with the potential to provide better IC symptom relief.

Personal Impact:

Researchers from the National Opinion Research Center (NORC) at the University of Chicago presented the first results from the NORC/ICA METRIC epidemiology survey at the American Public Health Association’s 135th Annual Meeting and Exposition in Washington, DC.

The study was based on nearly 3,000 responses to a 28-page survey that gathered information on IC patients’ life experience.

The study found that:

40 percent of respondents reported low self-esteem as a result of IC

42 percent believed that IC caused them to “miss out on life”

31 percent admitted that IC led them to have suicidal thoughts

22 percent noted that IC has caused them to lose close, meaningful relationships

66 percent said IC had negatively affected intimacy

71 percent noted pain during sexual activity

Patients Have Record Impact on Capitol Hill:

“Because of the efforts of IC patients, policymakers on Capitol Hill are recognizing and more aggressively addressing the challenges chronic pain patients face from a fractured healthcare system that limits access to the multimodal therapies patients need and from the Social Security Administration’s bureaucracy in granting disability benefits. Our advocates have also helped legislators recognize the need to influence the direction of federal research so that NIH is investing in future therapies and cures for these intractable conditions,” said Government Affairs Consultant Libby Mullin.

Here is the contact information for the ICA:

Interstitial Cystitis Association
110 North Washington Street
Rockville, MD 20850
800-HELP ICA (800-435-7422)

Thank goodness for all of the great work this organization does. It helps so many people!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

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