Q&A With Stephen Taylor of the Sjögren’s Syndrome Foundation

Venus Williams recently announced she has been diagnosed with Sjögren’s Syndrome. Here’s a look at just what the disease is, its treatments, and how sufferers can live a healthy life

By: Melissa Romero

Venus Williams was recently diagnosed with Sjögren’s Syndrome, a chronic autoimmune disease. Photograph by Kyle Gustafson

Just days after winning her first-round match at the US Open, Venus Williams withdrew from the tournament, saying she had been diagnosed with Sjögren’s syndrome.

Sjögren’s syndrome is an autoimmune disease that causes extreme fatigue and can lead to serious complications of internal organs. Williams, a seven-time Grand Slam winner, said in a statement, “I enjoyed playing my first match here and wish I could continue but right now I am unable to. I am thankful I finally have a diagnosis and am now focused on getting better and returning to the court soon.”

Although the disease affects more than 4 million people in the US alone, its symptoms and treatment are not well-known among the general public. We spoke with Steven Taylor, the CEO of the Sjögren’s Syndrome Foundation in Bethesda, to find out more about the silent disease.

What is Sjögren’s Syndrome?
Sjögren’s syndrome is a chronic autoimmune disease that affects moisture-producing glands in a patient’s body. Typically, patients experience hallmark symptoms like dry eyes and dry mouth. The third and fourth symptoms are fatigue and joint pain. The challenge is that moisture glands are found throughout your body and your internal body systems need moisture to operate, but patients may not feel that right away.

Is it true that people who suffer from Sjögren’s Syndrome have a higher risk of developing lymphoma cancer?
Yes. The serious complications involves the lungs and internal organs. There is a high survival rate, but it’s still something patients live in fear of. We don’t know the connection is, although it does have something to do with glands in the neck. Patients are 40 times more likely to develop lymphoma. About 5 percent of our patients will end up developing the cancer.

How many people suffer from Sjögren’s syndrome?
Estimates are around 4 million Americans. Yet our recent stats say that maybe only a one million are diagnosed with the disease. Obviously, Venus stepping forward and talking about the symptoms will hopefully help people who suffer from the symptoms, but didn’t know what was happening. When Venus was interviewed, she said she suffered from symptoms for awhile. Our patients experience that regularly, too.

Is there a specific group of people that tends to suffer from the disease?
One percent of the population worldwide suffer from Sjögren’s, so ethnicity doesn’t play a factor. But gender does. Ninety percent of Sjögren patients are female. Autoimmune diseases tend to skew towards women, such as lupus and Rheumatoid arthritis, and Scleroderma. Maybe about five other automimmune diseases skew towards men. But, a majority of them skew towards women.

There’s no cure for Sjögren’s, but what kind of medical treatment is available for patients?
Patients can take over-the-counter medications for dry mouth, dry eyes, and joint pain, to alleviate issues that they have with the disease. There are also products that people take called immunosuppresants. They suppress the immune system so it’s not so active and help suppress the disease from progressing, slowing down the syndrome. Patients can also take steroids like Prednisone for joint pain.

What else can patients do to live a healthy life in addition to medical treatments?
I think finding a rheumatologist is the most important patients can do. Partnering with a medical team is critical in order to make decisions on what you can and can’t do. Find a rheumatologist who is knowledgeable about Sjögren’s and is interested in working with you and the disease, because it can be complicated. Be knowledgable yourself, because it’s great to have your own wealth of knowledge.

If you’re feeling the symptoms of the syndrome, go to your primary care physician and talk to them specifically about Sjögren’s. Ask if you can get tested and if they can refer you to a rheumatologist.

What does having this disease for Venus Williams mean for her future? Do you think she’ll be able to play at a professional level anymore?
That’s the million dollar question. It really varies with each patient. The challenge is that there’s no one progression track for everybody; each person progresses differently. My mom has had Sjögren’s Syndrome for 14 years, but she still ballroom dances, runs half marathons, and remains very active. Other patients can’t work and are debilitated at 45 years old. They can function and get out of bed, but they have to rest a lot.

It really runs the gamut. Some people don’t take any prescriptions and are treating themselves with over-the-counter medications stay the same for 20 years.

Venus is a strong women and she’s shown what’s important in her life. Because of Sjögren’s, she may have to give up on some things. It’s going to take a great partnership with her partners.

We have people living with Sjögren’s silently because they’ve never come forward. With Venus stepping forward, we applaud her for her willingness to do that.

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