Tennis champion Venus Williams and musicians Halsey and Solange Knowles have one big thing in common — and it’s not just their positions at the top of the celebrity food chain.
Despite the physical demands of their careers, all three have been vocal about receiving the same autoimmune disorder diagnosis and the fatigue and joint pain that comes with it.
For Williams, her challenging road to a diagnosis forced her to take a break from tennis in 2011. Over the last decade, Halsey and Knowles have each spoken publicly about their disorders, as well as their various other struggles with chronic illness.
The autoimmune disorder that unites them is known as Sjogren’s syndrome, which can often accompany other immune system disorders, like rheumatoid arthritis and lupus, according to the Mayo Clinic.
It’s estimated that around 4 million Americans have Sjogren’s syndrome — what many call an “invisible illness.” But the A-List attention now paid to Sjogren’s, thanks in large part to the advocacy from these celebrities, constitutes a big shift for chronic illness awareness.
What are the symptoms of Sjogren’s syndrome?
Sjogren’s syndrome is most commonly associated with dry eyes and mouth, as it affects the mucus membranes and can result in fewer tears and less saliva. But it’s typically marked by other symptoms, too.
As Williams said in an April 2022 video about Sjogren’s awareness, “Every autoimmune disease presents in different ways for different people. And we all have similar symptoms, but different symptoms. I encourage you to advocate for yourself, find doctors that believe in you and listen to you.”
The National Institutes of Health say that in addition to the dry eyes and mouth, Sjogren’s might also be characterized by “fatigue, joint pain, inflammation in the liver, kidney, lungs, blood vessels, nerves and brain.”
Certain types of Sjögren’s also put patients at risk of suffering from cancers like lymphoma.
It can also lead to vaginal dryness and complications during pregnancy.
A Sjogren’s diagnosis frequently accompanies other autoimmune disorders.
Halsey and Knowles have each publicly shared that they also struggle with Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS). In 2022, after the birth of Halsey’s son, Ender Ridley, the singer also disclosed that they had been diagnosed with lupus and a rare T-cell lymphoproliferative disorder — though they told Jimmy Fallon last year that their symptoms are “under control.”
Who is most likely to get Sjogren’s syndrome?
A typical Sjogren’s patient is over the age of 40, and may also have another rheumatic disease, though the patient profile can vary widely.
As with many autoimmune disorders, women are at a higher risk of developing Sjogren’s syndrome than men. But men who receive the diagnosis might be in for more serious complications, according to the NIH.
How is Sjogren’s syndrome diagnosed?
Many people, including the prominent celebrities who struggle with Sjogren’s, say the process of getting diagnosed was long and winding.
“Sjögren’s is a complex and often invisible disease,” Williams told the Sjogren’s Foundation in April 2022. “As a patient, I was misdiagnosed many times and my symptoms got progressively worse to the point where I couldn’t play professional tennis anymore.”
Without a specific rubric to test for Sjogren’s, doctors mostly have to go through the process of elimination. For the patient, that could involve visiting a whole host of specialists who will look for warning signs like “insufficient tear film on your eyes, decreased saliva production, salivary gland inflammation and an underlying autoimmune disorder,” according to the Johns Hopkins Medicine blog.
“Diagnosing Sjögren’s syndrome requires gathering a lot of information, which your doctors will collect from a combination of tests on your eyes and mouth, blood and urine tests and biopsies.”
What are some potential complications from Sjogren’s syndrome?
The Mayo Clinic warns that Sjogren’s can lead to a host of complications throughout the body. Common complications include dental cavities, because saliva serves as a barrier between teeth and bacteria; oral thrush, or yeast infections in the mouth; and vision problems stemming from chronically dry eyes.
Less common but more serious complications can also occur from inflammation in the lungs, kidney, liver and lymph nodes. Some patients have also experienced numbness in the hands and feet.
Are there treatments for Sjogren’s syndrome?
Doctors don’t know what causes Sjogren’s, and there isn’t currently a cure.
But, according to the NIH, there are treatments that can help manage symptoms, including one drug that’s already used to treat rheumatoid arthritis.
Researchers are exploring the possibility of a drug called baricitinib, used by clinicians to treat everything from rheumatoid arthritis to alopecia to COVID-19, as a treatment for Sjogren’s. One promising study on mice showed that the treatment led to improved gland function and reduced inflammation, though more research is needed before it hits the shelves as a Sjogren’s-specific drug.
