Placing Interstitial Cystitis/Bladder Pain Syndrome on the Map: The Story of the Interstitial Cystitis Association

Abstract

In 1984, interstitial cystitis (IC) was considered a rare psychosomatic disorder in post-menopausal women. In 2014, the Interstitial Cystitis Association of America (ICA) celebrated its 30th anniversary. We’ve come a long way since 1984 and great progress has been made. IC is now recognized as a condition. That afflicts both men and women of all ages, including children and teenagers. It is not a psychosomatic disorder. Though it was once thought to be an orphan Disease (defined as affecting less than 200,000 people), we now know that there are millions of women and men who suffer from IC/BPS (bladder pain syndrome). In looking back over the past 30 years, there were seven key reasons why the ICA Became so successful: an extremely dedicated ICA staff, Board of Directors and Volunteers, a very strong Medical Advisory Board and participation of many other Urologists from across the country and around the world; cooperation of the media; epidemiological studies; the ICA’s Pilot Research Program; advocacy and our representation in Congress; and a strong working partnership with the National Institutes of Health (NIH).Great progress has been made, although we are still in the very early stages of understanding this disease, its causes, and finding treatments that are uniformly effective.