You may never have heard of Sjögren’s syndrome, but you may very well know someone suffering from the illness.
Sjögren’s (pronounced SHOW-grins) is a chronic autoimmune disease in which the body’s white blood cells attack the moisture-producing glands. The hallmark symptoms are dry eyes and dry mouth, but Sjögren’s may also cause dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas and the central nervous system. Patients may also experience extreme fatigue and joint pain and have a higher risk of developing lymphoma.
According to the Sjögren’s Syndrome Foundation, as many as four million Americans are living with the disease.
To raise public consciousness of the condition, which is still little known outside of the field of rheumatology, Gov. Brad Henry has declared April Sjögren’s Syndrome Awareness Month.
According to Kathy Moser, Ph.D., a Sjögren’s researcher at OMRF, awareness is a crucial first step in improving patient care. “Sjögren’s syndrome is a diagnosis that is often missed. Most patients and sometimes even clinicians know relatively little about the disease, or may have never heard of it,” she said. “It’s quite common that the combination of symptoms are not recognized as a single disease – patients may see their dentist for mouth dryness, their eye doctor about dry eyes and other doctors for systemic problems, so the pieces to the puzzle are not put together for a long period of time in many cases.”
Edmond resident Sharon Abrams knows the physical pain of Sjögren’s. “I’ve been so stiff that I could hardly get up in the morning. It hurts all over.”
But she also knows the frustration that came when, for five years, physicians were unable diagnose her condition. “They all thought I was crazy,” she said. “But a person knows her body, and I knew something was wrong.”
In 1997, a rheumatologist finally diagnosed her with Sjögren’s. She now sees five different specialists, including OMRF’s Hal Scofield, M.D., to keep her symptoms under control. And she works to promote awareness of the disease through the Oklahoma chapter of the Sjögren’s Syndrome Foundation.
“People need to know about this disease, if only so they can put a name to it,” she said. “It’s very hard to diagnose and it’s missed so often, but once you know what you have, then you can deal with it.”
At OMRF, Moser—in collaboration with Scofield and John Harley, M.D., Ph.D—is creating a database of Sjögren’s patients to use in large-scale DNA screenings. The goal of the research is to isolate and identify the genes responsible for the disease, with the hope that understanding the cause will lead to better diagnostic tests and treatments.
“Building a very large collection of samples and clinical data from carefully evaluated Sjögren’s syndrome patients will provide a critical and much needed resource for research,” said Moser. “Through our Sjögren’s Research Clinic, we are able to facilitate many different types of research projects led by investigators that are part of our OMRF team as well as numerous U.S. and international collaborators.”
If you are interested in participating or would like more information about the study, please call (405) 271-2574.