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- - - - - - - - - - - - April 26, 1999 |
Persistent pain drove Ratner to see 10 urologists, two allergists and two
infectious disease specialists. She was sent home with a diagnosis of
stress, a referral to a psychiatrist and a recommendation that she quit
medical school and settle down to a more quiet life. Instead, she went to
the library, where she read an article about a disease she had never heard
of that, according to a recent report in the Journal of Urology, affects
700,000 Americans: interstitial cystitis (IC). Causes and treatment unknown.
Symptoms well known: urgency and frequency of urination, pain during urination and, in some cases, pain during and after sexual intercourse. Journal article in hand, Ratner returned to her original urologist and
asked for the necessary diagnostic test. After much argument, he performed
the test and, sure enough, Ratner had IC. Once diagnosed, she learned how
little is known about treatment and how little interest there was in
learning more. "I spent the last two years of medical school in intense,
unremitting pain and isolation. I thought I was the only one in the world
with this disease." After contacting the National Institutes of Health, the Centers for
Disease Control and the American Urologic Association with no success, she
went to the media -- and things started to happen. She got a Manhattan news program to air a three-minute piece on IC, which prompted 3,000 letters -- mostly from women. "They all described the same symptoms, the same misdiagnosis and mistreatment by doctors," says Ratner. In 1984 some of those patients joined Ratner to form the Interstitial
Cystitis Association, a nonprofit patient advocacy group. Later that
year, Ratner appeared on "Good Morning America" and 10,000 letters came in to the ICA. In the 15 years since, ICA has organized support networks, testified in Congress and funded pilot research projects. It
publishes newsletters for patients and physicians and has co-sponsored (with
the NIH) a biennial reseach conference. It's helping, but not fast enough for those who are suffering. Until 1987
not one penny of federal research money had been spent on IC. By 1990, $11
million was earmarked for IC and related research via NIH, but Ratner
thinks that because more than 90 percent of IC patients are women and it's
considered a rare disorder of post-menopausal women, it's not a priority. "It's not rare," says Ratner, and in fact more than 25 percent of patients
are under age 30. And the numbers -- at least 700,000 Americans (compared to 20,000 with hemophilia and 30,000 with cystic fibrosis) -- warrant more attention. | ||
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