Celebrating 40 Years of the Interstitial Cystitis Association: A Journey of Advocacy, Research, and Hope

As I reflect on the incredible journey of the Interstitial Cystitis Association (ICA), I am filled with a deep sense of admiration and gratitude for the relentless efforts that have been poured into this organization over the past 40 years. Founded in 1984 by Dr. Vicki Ratner, an orthopedic surgeon who herself struggled with interstitial cystitis (IC), the ICA has been a beacon of hope, education, and advocacy for millions of patients around the world.

In 1985, just one year after the ICA was established, I began my journey as a Urologist. At that time, IC was a condition shrouded in mystery, often misunderstood and misdiagnosed. Patients suffering from the debilitating pain and urinary symptoms associated with IC were frequently dismissed or told that their symptoms were "all in their head." There was little research, scant treatment options, and almost no public awareness.

I vividly remember meeting Dr. Ratner in August 1987 at the NIDDK Consensus meeting in Bethesda Maryland. It was a time of burgeoning awareness and hope for those of us determined to uncover the truths about IC. Back then, we believed that only approximately 100,000 people were affected by IC, with a 10:1 ratio of women to men. Today, we know how much we underestimated the impact of this condition. IC is estimated to affect 3-8 million women and 1-4 million men in the US, with many more men affected than previously thought.

Moreover, our understanding of IC has dramatically evolved. What we once believed to be solely a bladder disease has revealed itself to be a much more complex condition. Symptoms can originate not just from the bladder but also from areas outside the bladder, as well as the brain and central nervous system. This shift in understanding has been pivotal in reshaping our approach to diagnosis and treatment, acknowledging the diverse phenotypes or subtypes of IC/BPS.

We have learned so much

Thanks to the MAPP Network, we now recognize that there are different subtypes or phenotypes of IC and bladder pain syndrome. My recent book, IC Journey to Wellness, delves into these very phenotypes, offering a comprehensive guide to understanding the multifaceted nature of IC/BPS. The knowledge we have gained over the years, in large part due to the efforts of the ICA, has empowered both patients and healthcare providers to approach IC with a more holistic and personalized mindset. We have learned so much over the past 40 years!

The ICA's Impact

The ICA’s impact extends beyond the medical community. Through its efforts, IC has gained recognition among lawmakers, leading to increased funding for research and better patient protections. The annual IC Awareness Month, celebrated every September, is a testament to the ICA's ongoing commitment to raising public awareness and supporting those living with IC.

As someone who has spent nearly 40 years in the field of urology, I have witnessed firsthand the transformative effects of the ICA’s work. I have seen patients who once felt isolated and hopeless find comfort and community through the resources provided by the ICA. I have also seen how the organization’s advocacy has driven significant advancements in research, leading to new treatments that have improved the quality of life for so many.

Hope for the future

As we celebrate this milestone anniversary, we must also look to the future with hope and determination. There is still much work to be done. We must continue to support the ICA in its mission to find better treatments, to educate the public and medical professionals about IC, and to ultimately find a cure. The journey of the ICA over the past 40 years is a testament to what can be achieved when patients, healthcare providers, researchers, and advocates come together with a shared purpose. Go to www.ichelp.org for more information about the ICA.

Thank you, Dr. Ratner, and thank you to the ICA for four decades of unwavering dedication to the IC community. Your work has changed lives, and your legacy will continue to inspire us all as we move forward in the fight for interstitial cystitis relief.

Dr. Vicki Ratner and Dr. Phillip Hanno on Good Morning America

Here’s to the next 40 years of hope, progress, and healing.

Jill M. Peters-Gee, M.D.