Forming a Non-Profit Organization for Patients with a Urological Disease in 1984: Does it relate to Clinical Microbiology Today?

Abstract

Interstitial Cystitis (IC), also known as Painful Bladder Syndrome (PBS), was initially described in the mid 1800’s. It was not until 1984 that a patient non-profit organization, the Interstitial Cystitis Association (ICA), was formed in order to work with IC patients and the National Institutes of Health (NIH) to define and increase research on this enigmatic and debilitating condition. The media played an important role in bringing together patients and helping them understand that they were not alone in their suffering. Epidemiological studies legitimized the disease and research at the NIH and other academic institutions progressed enormously. However, despite over 30 years of hard work, urologists have been unable to determine a cause for IC or any truly effective treatments to help patients suffering from this condition. Collaboration with other specialties, in particular clinical microbiology, may prove fruitful in advancing research into the cause and potential treatments for IC.