Living with Sjogren's syndrome
December 21, 1999
Web posted at: 11:01 AM EST (1601 GMT)
By Susan Milstrey Wells
(WebMD) -- After six years of trying to figure out the cause of her extreme fatigue, swollen glands, and low-grade fevers, Katherine Morland Hammitt finally got a diagnosis: She had Sjogren's Syndrome, a common but little-known autoimmune disease that causes the body to mistake its own cells as foreign invaders.
Relieved to finally have an answer, she was nonetheless fearful of what the future would hold. A journalist and the mother of two children, Hammitt grappled with her anxiety by learning everything she could about her disease.
A widespread problem
In her research, Hammitt found that the disease was first identified in 1933 by Swedish ophthalmologist Henrik Sjogren (pronounced SHOW-grin). Sjogren first reported that many of his female patients suffered from dry eyes, dry mouth and rheumatoid arthritis, according to Dr. Stuart S. Kassan, clinical professor of Medicine at the University of Colorado Health Sciences Center and chairman of the Sjogren's Syndrome Foundation (SSF) Medical Advisory Board.
Today, the SSF estimates that 2 million to 4 million Americans, 90 percent of them women, have Sjogren's syndrome, making it the most common rheumatic disease. Sjogren's causes the immune system to attack the body's moisture-producing glands, leading to the classic symptoms of dry eyes and dry mouth. Fatigue and joint pain are also common.
But Hammitt and others believe that Sjogren's syndrome can cause more complicated health problems. Now in her fourth year as SSF president, Hammitt has testified before Congress and at the National Institutes of Health (NIH) about the potential seriousness of the disease.
Hammitt points out that the dry eyes and dry mouth associated with Sjogren's can cause blurred vision and difficulty with talking and swallowing. Sjogren's can also cause dryness of the skin, nose and vagina, and can affect other major organs and systems of the body, including the kidneys, blood vessels, lungs, liver, and pancreas, as well as the nervous and gastrointestinal systems. People with Sjogren's syndrome have a 44 percent greater risk of contracting lymphoma, a cancer of the lymph glands that occurs in approximately 5 percent of Sjogren's syndrome patients, according to Kassan.
Sjogren's poses a special risk for some pregnant women as well. "Women with Sjogren's face an increased risk of miscarriage, a 30 percent chance of a flare-up (of their symptoms) with the major hormonal changes of pregnancy, and the threat of fetal heart block," Hammitt told an NIH panel.
A difficult diagnosis
As with many autoimmune diseases, Sjogren's syndrome can be difficult to diagnose. Many of the symptoms are similar to those of other diseases, and they come and go. Also, many women go undiagnosed because they mistakenly assume that dryness is a normal part of aging, so they don't report the symptoms to their doctor, notes Kassan.
Typically, a rheumatologist will make the diagnosis of Sjogren's syndrome based on a patient's history, a physical examination and the results of tests that measure tear production and salivary gland inflammation. Blood tests for specific autoantibodies that may indicate Sjogren's syndrome are not definitive because not everyone with Sjogren's will test positive for these autoantibodies, Kassan points out.
Treating the symptoms
Because there is no cure for Sjogren's syndrome, treatment is aimed at relieving symptoms. The women Hammitt met at her first support group meeting recommended artificial tears, a special kind of eye drop designed to treat dry eyes, and saliva substitutes. A new prescription medication called pilocarpine (Salagen) can ease the symptoms of dry mouth. Doctors may also prescribe nonsteroidal anti-inflammatory drugs (NSAIDs) for pain and discomfort. In more serious cases, immune-suppressing drugs such as prednisone or methotrexate are prescribed.
Making life count
Like others living with Sjogren's, Hammitt has learned to successfully manage the symptoms of the disease. But the fears that accompany her illness linger.
Although Hammitt has twice been told she might have lymphoma, she believes that having a chronic illness has helped her set priorities.
"Many people don't get that early nudge to make life count," she says.
Susan Milstrey Wells is the author of "A Delicate Balance: Living Successfully with Chronic Illness."Copyright 1999 WebMD, Inc. All rights reserved.
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