A step closer to treatment

IC: Work by scientists at University of Maryland is giving hope to sufferers of a chronic and often-debilitating bladder disorder.

Medicine & Science

August 02, 2004|By Erika Niedowski | Erika Niedowski,SUN STAFF

Dr. Vicki Ratner tried everything: She had surgery to stretch her bladder. She took a pill designed to coat the organ's inner wall. She began an "elimination" diet that started with eating nothing but rice.

She even had a Los Angeles jeweler fashion a mold for a urethral suppository containing cortisone and antibiotics.

"That's going to quite an extreme," Ratner said. "And it didn't work."

Nothing except for low-dose pain medication has given the 53-year-old orthopedic surgeon relief from her interstitial cystitis, a chronic and often-debilitating bladder disorder that affects about a million people - mostly women.

Researchers have been trying for decades to better understand the painful and difficult-to-diagnose problem, for which modern medicine yet has no cure.

And, while they still haven't unlocked the mystery, scientists at the University of Maryland School of Medicine and the National Cancer Institute have come one step closer to developing a diagnostic test and, potentially, more effective treatments.

Reporting last week in the online Proceedings of the National Academy of Sciences, the team described for the first time the structure of a toxin found in the urine of most interstitial cystitis, or IC, patients. The toxin, known as antiproliferative factor, inhibits the growth of epithelial cells in the bladder, which line and protect the organ's inner wall.

"Now that we know the structure, and we can make it synthetically, we can make it in large enough quantities to be able to develop antibodies or other reagents for a diagnostic test," said Dr. Susan Keay, professor of medicine at the University of Maryland and the study's lead investigator.

What's more, she said, knowing the toxin's make-up should help researchers understand how it works inside the bladder - which could yield better treatments.

"Even though there are a couple of approved therapies and there are others being tried by urologists, no one has identified a reliably effective therapy for this disease," explained Keay, who has been studying IC for about a dozen years.

"Some patients are helped more by the treatments ... than others, but in general most patients still continue to have some degree of pain. And depending on how debilitating their symptoms are, it can affect their life, their work."

That's the story of Tina Nachodsky of Bel Air, whose disorder was diagnosed in 2000.

Most of the 39-year-old's days are filled with some degree of pain, which forced her to leave her job as an accountant for Legg Mason nearly two years ago. She constantly needs to urinate, making it impossible to sleep through the night.

Like many desperate IC patients, Nachodsky has tried a variety of therapies, including heating pads, warm baths and medication. She participated in a clinical trial, funded by the National Institute for Diabetes and Digestive and Kidney Diseases (NIDDK), that tested whether a bacterium used in a tuberculosis vaccine and for certain bladder cancers would relieve her pain. It didn't.

As head of a local support group for IC patients in Baltimore and Washington, Nachodsky gets some measure of relief just from contact with her fellow sufferers.

"This disease, it's not just a matter of, yeah, you can't work anymore," she said. "It affects you sexually, it affects you emotionally, it affects you financially. In every aspect of your life, it touches you."

Symptoms of the disorder - which include urinary urgency and frequency as well as pelvic pain - can be so severe that only about half the patients who have it can work full-time, according to NIDDK. The institute estimates the cost in lost wages and medical expenses to be $1.7 billion.

Because the symptoms mirror those of other bladder problems, IC is difficult to diagnose. Many women assume they have a urinary tract infection. A lot of men are told they suffer from prostate inflammation or infection.

Over the years, researchers have tested various hypotheses about the origins of the disorder. But none has been able to nail down either a bacterial or a viral cause. Some suspect a defect in the bladder wall that allows urine to seep through and cause irritation.

Keay and her colleagues believe that the antiproliferative factor they have described - which keeps the protective cells that line the bladder from growing - may be the root of the problem.

"That may explain why, in biopsies from IC patients, one of the most consistent abnormalities is thinning or an ulceration of that lining," she said.

The encouraging news is that, once the toxin is removed, the epithelial cells start growing again after a week or 10 days.

Ratner, of San Jose, Calif., who founded the Interstitial Cystitis Association in 1984 and has lobbied tirelessly for more federal research funding, can hardly contain her enthusiasm over the team's findings.

"These patients have gone from doctor to doctor to doctor," she said. "It's a devastating experience to not get the problem validated - in addition to having to live with the effects of the problem. I think this will give patients a lot of hope."

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