If you’re living with Sjögren’s disease, you might feel like you’re the only one. Many people haven’t heard of Sjögren’s, even though it’s more common than some other autoimmune diseases, such as lupus and multiple sclerosis. Some people with Sjögren’s are misdiagnosed, or their symptoms are dismissed by healthcare providers.

Hearing real stories from celebrities with Sjögren’s can help you feel less alone. When people in the public eye share their diagnosis, it can raise awareness and help others feel seen and understood. Here are some well-known celebrities who’ve been open about living with Sjögren’s disease.

1. Venus Williams

In 2011, Venus Williams shared that she had been diagnosed with Sjögren’s after struggling to keep up with the demands of her life as a professional tennis player.

For years, she experienced fatigue that made it hard to train and compete at her usual level. Like many people living with Sjögren’s disease, she went a long time without an accurate diagnosis. For her, the process took seven years — the average amount of time — she told Essence. Even though she got blood tests every six months, the results didn’t clearly point to Sjögren’s.

Williams said that before her diagnosis, she worried she was “lazy” because she couldn’t recover or push through like she once had. As an athlete, she felt she shouldn’t “make excuses” for her challenges. After receiving her diagnosis, she took extended breaks from competition, missing months of play while adjusting her expectations on the tour.

Because of dry eyes caused by Sjögren’s, Williams can’t wear contact lenses. She has also described getting uncomfortable mouth sores from severe dry mouth.

Williams has spoken about the need to rest more, pace herself, and restructure her life to protect her health. She works to manage stress, sleep, and energy, though she admits she doesn’t always follow her own rules. She has also tried a vegan diet and aims to limit sugar.

Instead of pushing herself as hard as she once did, Williams now listens more closely to her body. Learning to pace herself and respect personal limits is something many people with Sjögren’s can understand.

Although she hasn’t shared every detail of her health journey, Williams has become an advocate for Sjögren’s awareness. She has supported efforts such as Sjögren’s Awareness Month and spoken openly about the frustration of being misdiagnosed. Receiving the correct diagnosis lifted an emotional weight, she said. Williams encourages others to keep speaking up and seeking answers when something doesn’t seem right.

2. Carrie Ann Inaba

Carrie Ann Inaba is best known as a judge on the TV show “Dancing With the Stars.” She’s also a lifelong dancer and a former co-host of “The Talk,” a daytime talk show.

Inaba’s health journey started with dry eyes. After dealing with this symptom for years, she asked her doctor if she could have Sjögren’s disease but was told she didn’t.

Later, Inaba saw a rheumatologist who correctly identified Sjögren’s disease. She also had extreme fatigue and chronic pain. Inaba has shared that she developed anxiety and depression, especially when she couldn’t get clear answers to the cause of her symptoms.

Inaba’s Sjögren’s experience is complex because she also lives with other autoimmune disorders, including fibromyalgia, lupus, and rheumatoid arthritis.

Tracking her symptoms helps Inaba manage her health. “One secret I use is to keep a calendar,” Inaba told NIH MedlinePlus Magazine. “I like to look at it a month at a time because I need to gauge my energy. I know if I have a really good day, I might have a bad day next. I call it the roller coaster of energy. So, when I can see my life a month at a time, it is easier to plan my days off.”

Inaba has made several lifestyle changes to support her well-being. For instance, she takes a slow, steady approach to exercise, drinks a protein shake each morning, and prioritizes nutrition. To manage stress and stay calm, Inaba uses:

• Acupuncture
• Massage
• Meditation
• Short naps and breaks throughout the day
• Yoga

She has also shared several tips for managing Sjögren’s-related dryness. For dry skin, she recommends moisturizing twice a day and applying body butter first, followed by body oil. She uses eye drops before bed and when she gets up. Running a humidifier while sleeping, using a mouth-moisturizing spray, and keeping a water bottle nearby help her manage dry mouth.

As an awareness ambassador for the Sjögren’s Syndrome Foundation, Inaba uses her platform to share her story and encourage others who are living with this disease.

3. Solange Knowles

Singer, songwriter, and actor Solange Knowles cancelled some major performances in 2017 while trying to understand what was happening to her health.

In 2018, Knowles — who’s also the sister of pop star Beyoncé Knowles-Carter — shared that she had been diagnosed with Sjögren’s disease, along with other health conditions. Since then, she has used her platform to connect with others and raise awareness about autoimmune conditions.

In addition to Sjögren’s disease, Knowles lives with postural orthostatic tachycardia syndrome (POTS) and mast cell activation syndrome (MCAS). POTS affects parts of the autonomic nervous system, which controls heart rate and blood pressure. MCAS affects how the immune system responds and can cause symptoms throughout the body, including the digestive tract, skin, and lungs.

A 2024 People article reported that on social media, Knowles wrote, “I got diagnosed with POTS, Sjögren’s, and MCAS in 2018 and really relate to not wanting your health to be your identity.”

What This Means for You

When public figures and celebrities talk openly about living with Sjögren’s, they may increase the chances that more people will recognize their own symptoms sooner and speak up to get answers and the help they need.

Even a world-class athlete like Williams went years without a correct diagnosis, which highlights how difficult it can be to recognize Sjögren’s disease and get the right treatment.

Seeing athletes and other public figures continue to reach their goals, despite Sjögren’s, can be empowering. It’s normal to have good days and bad days when managing Sjögren’s, but effective treatment and the right support can make a real difference.

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On MySjögrensTeam, people share their experiences with Sjögren’s disease, get advice, and find support from others who understand.

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