A single observation, with careful study, grows into a large-scale research grant.
Thomas Chelimsky, MD, a neurologist with Case Western University in Cleveland, Ohio, noticed that many of his patients with autonomic disorders, including fainting, orthostatic hypotension, irritable bowel syndrome (IBS), and fibromyalgia, also had IC, and that some of them also had family members with autonomic disorders and IC. This fit with the concept that IC may have a basis in the nervous system, not the bladder, and that it may have a genetic or environmental component.
In 2005, Dr. Chelimsky proposed to the Fishbein Family IC Research Foundation to study this observation. The Fishbein Foundation funded the project, Familial Aggregation of Interstitial Cystitis with Other Functional Autonomic Disorders. The budget of $29,000 provided the seed funding Dr. Chelimsky needed to begin investigating the hypothesis that people with IC commonly suffer from a perplexing variety of autonomic disorders. Conditions studied in this project included IBS, Raynaud’s syndrome, fibromyalgia, complex regional pain syndrome (CRPS), migraine headache, cyclic vomiting syndrome, chronic fatigue syndrome (CFS), functional dyspepsia, functional abdominal pain, syncope (fainting), and postural orthostatic tachycardia syndrome (POTS).
During the study, Dr. Chelimsky noted that one possible explanation for the connection is that IC may be a form of a larger group of autonomic disorders. He concluded that the patients and their family members might be expressing these different syndromes because of undiscovered genetic or environmental factors, or both. In addition, the findings, presented at the International Symposium for the American Autonomic Society (ISAAS) last fall, indicate that people with IC had the greatest number of associated disorders. They had expected a more generalized syndrome -- one that affects the entire body, such as fibromyalgia -- to have a greater number of associations. They postulate that if IC occurs later in the progression of autonomic disorders, this would account for the large number of associated disorders seen with IC.
With these initial results in hand, Dr. Chelimsky applied for a grant through the National Institutes of Health (NIH) to study more extensively this phenomenon. He recently learned that the NIH awarded him $3.7 million to expand his original findings through the project Neurophysiologic & Autonomic Characterization of Interstitial Cystitis/Painful Bladder Syndrome, which will further determine whether the main abnormality in IC actually lies in the autonomic nervous system, rather than the bladder.
Dr. Chelimsky feels that this next step will provide, for the first time, a detailed clinical investigation of IC patients’ nervous system function. He hopes that this expanded view will lead to a better understanding of the possible causes of IC and better treatment and prevention strategies.
Posted June 18, 2009