Sjogren's syndrome

You don't know what it is, but you might have it.

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In 1930, in Sweden, a 49-year-old woman came to a doctor named Henrik Sjogren because she was unable to shed tears when she cried. The doctor’s eventual diagnosis became known as Sjogren’s syndrome.

Never heard of Sjogren’s? You’re not alone. Less than 20 percent of 526 women surveyed in a recent study had ever heard of Sjogren’s (pronounced SHOW-grins), an autoimmune system disease that attacks the body’s moisture-producing glands, leading to dryness of the mouth, eyes, vagina and skin, as well as fatigue. Many women ignore the symptoms because they often occur at the onset of menopause.

“Sjogren’s syndrome and menopause share symptoms like vaginal dryness and fatigue, but Sjogren’s is actually a connective tissue disorder, a cousin to lupus or rheumatoid arthritis,” says Dr. Frederick Vivino, an associate professor of medicine at Thomas Jefferson University. And if Sjogren’s goes untreated, it can result in more serious problems — tooth decay, oral ulcers, neurological, muscular and gastrointestinal problems and worse. Vivino says, “Up to 10 percent of patients may develop serious internal organ manifestations, such as inflammation of the lungs, that could eventually lead to death.”

According to the Bruskin/Goldring survey, three out of four women over age 35 experience symptoms of Sjogren’s syndrome, but less than half mention the problem to their doctor, often because they believe they’re seeing the normal signs of menopause. The series of diagnostic tests to determine if a patient is suffering from Sjogren’s syndrome includes blood tests for autoantibodies, a lip biopsy and various tests for dry mouth and eyes. No cure exists for the syndrome. Treatments include anti-inflammatory and anti-malarial drugs, sialogogues to stimulate the glands and steroids.



“We don’t want to cause a panic,” Vivino says. “But these symptoms are not trivial. It’s dangerous to ignore them. If women have symptoms and they persist, they should ask to be evaluated for Sjogren’s.”

Approximately 200,000 cases of Sjogren’s syndrome have been diagnosed in the United States, but many experts believe that up to 3 million people may be affected, about 90 percent of whom are women. “If these numbers are correct,” Vivino says, “I expect the majority of cases are walking around undiagnosed and untreated.”

Jon Bowen is a frequent contributor to Salon.

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