You don’t miss your saliva and tears until they’re gone.
Venus Williams joined the 4 million people in the U.S. living with Sjogren’s syndrome when she was diagnosed with the autoimmune disease last week. The syndrome causes white blood cells to destroy moisture-producing glands in the eyes and mouth, leading to uncomfortable dryness.
In some cases, the syndrome affects the kidneys, liver, pancreas, blood vessels, skin, and gastrointestinal tract. Williams reported that fatigue and joint pain associated with Sjogren’s were severe enough to prompt her to withdraw from the U.S. Open tennis championship.
Ninety percent of Sjogren’s sufferers are women. The syndrome can be tricky to diagnose, because the symptoms masquerade as arthritis, menopause, chronic fatigue, fibromyalgia, multiple sclerosis or other disorders. The dry mouth and eyes caused by Sjogren’s may be mistakenly attributed to medication, as many drugs used to treat depression and high blood pressure also produce this side effect.
No single test confirms or rules out Sjogren’s syndrome. The diagnostic process usually includes a series of blood tests to identify blood proteins, rheumatoid factor, inflammation, and antibodies associated with Sjogren’s. Eye and mouth exams measure tear and saliva flow.
Sjogren’s syndrome often goes undetected for years, as in Kathy Bostrom’s case.
The Long Beach resident developed severe dry eyes at age 40, but Sjogren’s was not diagnosed until she was 51. She suffered from extreme fatigue. “There were days when I couldn’t drag my behind out of bed,” she said.
Along with discomfort, debilitation, and possible depression that go along with the syndrome, people with Sjogren’s often contend with disbelieving relatives and coworkers who dismiss dry eyes as insignificant or who pipe up, “You don’t look sick.”
Bostrom said her doctor advised her to tell skeptical people that “Sjogren’s is the first cousin to lupus,” another autoimmune disease with some similar symptoms. She added, “Sjogren’s is more than dry eye. But until you’ve experienced dry eye, you can’t understand how unspeakably painful it is. It can destroy your cornea.”
People with Sjogren’s syndrome may be cared for by a rheumatologist or a primary care physician. Finding a physician who is knowledgeable about Sjogren’s and willing to work with you is very important, Bostrom said. She welcomes Venus Williams’ disclosure that she has the syndrome.
“Having a celebrity diagnosed will bring more attention to Sjogren’s. [Williams] could have kept it quiet, but it will be a boon to a lot of people that she decided to come forward in a very straightforward way,” she said. “I want to say a big thank-you to her for that.”
Sjogren’s syndrome can’t be cured, but symptoms can be managed. The burning, itching, gritty feeling of chronic dry eyes associated with Sjogren’s is eased with eye drops and by keeping the eyes protected with goggles so they are less exposed to air. Special lenses also may help. People with Sjogren’s syndrome are prone to blepharitis, inflammation and swelling of the eyelids. Warm compresses can relieve the pain and swelling.
Without sufficient saliva to keep the mouth moist, eating becomes difficult and gums and teeth are more vulnerable to infection and cavities. Moisturizing gels, mouthwashes, and sprays provide relief, as can prescription medications to help stimulate saliva flow. A diet that includes small, frequent meals, softer, nonspicy foods, and foods served at room temperature will help make eating easier and more comfortable.
Extra rest and nonsteroidal anti-inflammatory medications can help relieve Sjogren’s-related fatigue and joint pain. Drugs to suppress the immune system may also be prescribed to treat the syndrome, but the side effects of these drugs must be carefully balanced with the benefits they provide.
More information is available from the Sjogren’s Syndrome Foundation. For information and support about dry eyes, contact Judi at 949-933-2417 in Orange County or contact Kathy Bostrom in Long Beach at (562) 595-8208.