When professional tennis star Venus Williams withdrew from the U.S. Open because of Sjögren’s syndrome, fans around the world asked, “What’s Sjögren’s?”
Except at OMRF, where scientists have been running the Sjögren’s Research Clinic since 2007.
Sjögren’s is an autoimmune disease in which a person’s immune system attacks the body’s moisture-producing glands, damaging the ability to produce saliva or tears. Common symptoms of the syndrome include dry eyes and dry mouth and fatigue, which Williams cited when she withdrew minutes before a scheduled match against Sabine Lisicki Wednesday. The disease can also affect other organs and cause a variety of additional symptoms such as arthritis and memory problems. Sjögren’s is thought to affect as many as 3 million Americans.
“I’m very hopeful that Venus can return to the court like she’s said she will,” said OMRF researcher and director of the Sjögren’s Research Clinic Kathy Moser, Ph.D. “The issue will be overcoming that fatigue.”
Unlike lupus, another autoimmune disease, Sjögren’s syndrome is progressive, Moser said. It doesn’t go through flares and remissions—the symptoms tend to stick around.
One possible reason why that’s the norm is that many doctors don’t treat the disease, choosing instead to manage the symptoms, she said. With the focus of getting Williams back on the court, doctors may choose more aggressive treatments, including immuno-suppressant drugs to calm the immune system.
A five-time Wimbledon champion, Williams said finally getting a diagnosis after years of wondering what was wrong gave her some relief.
“Sjögren’s is hard to diagnose, largely because it’s still very obscure,” Moser said. “But we’re working on research that, we hope, will turn up new information that might make it easier to find and treat.”
Moser is asking volunteers who have been diagnosed with Sjögren’s syndrome or believe they might suffer from the disease to take part in the Sjögren’s Research Clinic. The goal of her research is to isolate and identify the genes responsible for the disease.
“The larger our collection of samples and clinical data, the better our chances are of finding the genes responsible for the disease,” she said. “Through our Sjögren’s Research Clinic, we are able to facilitate many different types of research projects led by investigators who are part of our OMRF team as well as numerous U.S. and international collaborators.”
The results can lead to the development of improved diagnostic tests and therapeutic options for the common and debilitating disorder, she said. A similar approach at OMRF has led to breakthroughs in the identification of genes related to lupus.
Volunteers who qualify for the study will be asked to donate a small blood sample and meet with an ophthalmologist, a rheumatologist and an oral medicine expert for specialized tests. The medical evaluations, provided at no cost to the volunteer, are worth about $2,600, and patients can take the results back to their primary care physicians.
“Only a handful of centers around the world are set up to do this kind of analysis in a single visit,” Moser said.
If you are interested in participating or would like more information about the study, please call 271-2574.
