National Health Council — Voluntary Health Agency Guide

Interstitial Cystitis Association

The Interstitial Cystitis Association (ICA) is a vital and dynamic national organization offering information and support to IC patients and their families, educating the medical community about IC, and promoting research to find effective treatments and, ultimately, a cure for IC.

The ICA was founded in New York in 1984 by Dr. Vicki Ratner, then a medical student who suffered from bladder symptoms which perplexed the numerous doctors she consulted. Through her own research, she found the condition interstitial cystitis and vowed to bring together other patients like herself for mutual support and to work towards finding a cure.

Dr. Ratner has succeeded in making interstitial cystitis known to both the medical and lay communities. The ICA has helped to establish a strong research program both within the ICA and through the National Institutes of Health (NIH). Because of the ICA's persistent political advocacy, IC research has gone from a position of zero funds in 1987 to where IC research now makes up one third of the urology budget at the NIH.

About the condition(s):

Interstitial cystitis (IC) is a chronic inflammatory condition of the bladder wall. The etiology is unknown and there are no uniformly effective treatments. Symptoms are similar to an acute urinary tract infection, and include pelvic pain, urinary urgency and urinary frequency. However, urine cultures are negative and patients do not respond to antibiotics. An estimated one million people in the United States suffer from IC — 90 percent of whom are women — a conservative estimate because many people with IC are either misdiagnosed or go undiagnosed. The incidence of IC is similar to that of Parkinson's Disease or type I diabetes, yet few people are aware of the condition. IC may be associated with other conditions such as vulvodynia, fibromyalgia and irritable bowel syndrome.

Epidemiological studies reveal that it takes, on average, five to seven years to obtain an accurate diagnosis of IC and that IC patients score worse on quality of life measures than patients with end stage renal disease on dialysis. Without adequate intervention, patients can experience severe pelvic pain and the need to void as often as every 10 to 15 minutes both day and night. Some patients are housebound, and many are unable to work or care for their families. Intractable pain has resulted in suicides each year because patients are left to live with severe, debilitating pain and have nowhere to turn to for help.