To some who suffer from Sjogren’s syndrome, tennis star Venus Williams became a champion of a different sort when she announced last week that she has been diagnosed with the little-known autoimmune disorder.
Though Williams, 31, cited the condition as the reason she pulled out of the U.S. Open, she said she was “thankful to finally have a diagnosis” after having recently suffered joint pain, hand swelling, dry eyes and mouth, numbness, fatigue and an overall feeling of being “beat up.”
Sjogren’s (pronounced SHOW-grins) is a chronic disorder in which white blood cells target the body’s moisture-producing glands. Its hallmark symptoms are dry eyes and dry mouth, but Sjogren’s patients also often experience extreme fatigue and joint pain and sometimes problems with other organs or the central nervous system. People with Sjogren’s also have a higher risk of developing lymphoma.
Because the disease is often misunderstood and misdiagnosed, patients and their doctors are hopeful that having a celebrity like Williams discuss her diagnosis might shed some needed new light on Sjogren’s syndrome.
“I am sorry for (Williams) but happy for Sjogren’s patients who now have a national spokesman to make people aware of this terrible disease we have,” said Audrey Grey-Lowry, of Plainfield, who suffers from Sjogren’s.
For Grey-Lowry, 58, the diagnosis was elusive. It came in 2007, though she had suffered some symptoms, such as dry eyes, for 30 years. A doctor suspected 20 years ago that she had lupus, another autoimmune disorder.
“I’ve been on a combination of drugs for four years but don’t feel any better,” said Grey-Lowry, who also suffers from osteoarthritis, rheumatoid arthritis and fibromyalgia. “It’s a terrible disease.”
Dr. Frederick Vivino, chief of rheumatology at Penn Presbyterian Medical Center and director of Penn’s Sjogren’s Syndrome Center in Philadelphia, called Sjogren’s a cousin of lupus and rheumatoid arthritis. Sjogren’s is more common than people realize, Vivino said, affecting 3 million to 4 million Americans, 90 percent of whom are women.
Even many doctors are relatively unfamiliar with the disease, Vivino said, noting that the University of Pennsylvania has included Sjogren’s syndrome in its medical school curriculum only in the last year or so.
“Ms. Williams is very gracious to share her story with the public,” said Vivino, calling the tennis player the first notable person he can recall to talk publicly about Sjogren’s. “I suspect there are many others who have Sjogren’s but may not be convinced to take the symptoms seriously or have not been diagnosed. I hope this will open the door to more diagnoses and treatment.”
Doctors diagnose Sjogren’s by testing the eyes and mouth as well as testing for autoimmunity with blood tests. A biopsy of salivary glands in the lip is also often done. Although most diagnoses are made in people in their 40s or early 50s, Sjogren’s has been identified in younger people and, in rare cases, children. Vivino said Sjogren’s is underrecognized in particular in black women, who often are misdiagnosed with lupus.
In fact, on average it takes a person six to seven years to be diagnosed with Sjogren’s, Vivino said, as symptoms are often mistaken for depression, menopause, even hypochondria. And dry eyes are often treated by eye doctors who don’t ask about dry mouth, fatigue and other symptoms.
Williams, as she told “Good Morning America,” was diagnosed four years ago with exercise-induced asthma after having trouble breathing and was given medication that didn’t work.
Theories about what causes the syndrome include a genetic predisposition, hormonal factors and stress, Vivino said.
With Williams in the spotlight, Dr. James Grober, head of rheumatology at NorthShore University HealthSystem, said he is hopeful that fewer doctors and patients will write off eye dryness as just a sign of aging or mouth dryness as a side effect of medication.
Grober said that Sjogren’s is a chronic disorder that can’t be cured but can in many cases be controlled through medication. Some patients’ lives have minimal impact from the disease beyond eye and mouth dryness; others develop more serious complications. Others have to learn to cope with chronic pain and fatigue.
Jennifer Tricoli, a kinetic wellness teacher at New Trier High School in Winnetka, has had Sjogren’s for 10 years.
Tricoli, 36, who initially had very severe eye and mouth symptoms, as well as fatigue, said she has learned how to live with Sjogren’s by being proactive and balancing activities.
“I am glad Venus Williams is bringing so much attention to this,” Tricoli said. “The problem is you look fine and people have no idea. You are expected to be OK.”
But if Williams’ diagnosis might bring hope to other Sjogren’s sufferers, Tricoli said Williams can learn from other patients too.
“I think once she learns how to manage this she can go back to whatever she wants to do,” Tricoli said.
For more information go to sjogrens.org.
