Carrie Ann Inaba Partners with Novartis on SJÖUT Campaign to Raise Sjögren's Disease Awareness
Key Insights
Carrie Ann Inaba, TV personality and dancer, endured a decade of debilitating symptoms before receiving a Sjögren's disease (search) diagnosis in 2013, highlighting significant diagnostic delays common in autoimmune conditions.
Sjögren's disease (search) affects up to four million people in the U.S. and is the second most prevalent rheumatic autoimmune disease, yet remains widely under-recognized as an "invisible disease."
Novartis launched the SJÖUT for Sjögren's disease (search) education campaign in partnership with Inaba to help patients connect symptoms, find their voice, and advocate for appropriate care.
Television personality and dancer Carrie Ann Inaba has gone public about her more than decade-long journey with Sjögren's disease (search), partnering with Novartis on a new disease education campaign called SJÖUT for Sjögren's. The campaign aims to address what Inaba and patient advocates describe as a persistent under-recognition of the second most prevalent rheumatic autoimmune disease in the United States.
Sjögren's disease (search) affects as many as four million people in the U.S., according to the Sjögren's Foundation, yet it is frequently referred to as an "invisible disease"—a moniker that reflects both the lack of public awareness and the often-hidden nature of its symptoms.
A Decade Without Answers
Inaba's diagnostic odyssey mirrors a broader pattern seen across the Sjögren's patient population. Her earliest symptoms trace back to childhood, including recurring irritated and damaged corneas that sent her to eye doctors for years without resolution. As an adult, she experienced dry eyes, widespread pain, and what she described as "unyielding, unpredictable" fatigue that was unlike anything she had experienced as a dancer.
"It's hard to be diagnosed with Sjögren's disease (search)," Inaba said. "For me, I was experiencing dry eyes and having quite a few health issues, having widespread pain, incredible fatigue, which was unlike what I was experiencing before that as a dancer."
She initially attributed the pain to dancing injuries from her decades-long career, which included being one of the "Fly Girls" on the TV series In Living Color. "But the type of pain is different," she emphasized. "It's a heavy pain, and it's a relentless pain. So I'm used to pains from injuries from dancing. But this was sort of systemic inflammation that was happening in my body, and it was so heavy that it really stopped me from dancing."
It took approximately ten years of debilitating symptoms and consultations with multiple physicians before Inaba received her diagnosis in 2013. The breakthrough came when an ophthalmologist, noting her dry eyes and scratched corneas, suggested she see a rheumatologist. "The rheumatologist ran specific tests that only rheumatologists run, and I was diagnosed with Sjögren's disease (search)," Inaba recalled.
The Diagnostic Challenge
Diagnosing Sjögren's disease (search) is not straightforward, as there is no single definitive test. Physicians typically rely on a combination of approaches, including the Schirmer tear test to measure tear production, blood tests for antibodies such as Anti-SSA (Ro) and Anti-SSB (La) as well as ANA and rheumatoid factor, salivary gland imaging via sialogram or salivary scintigraphy, and in some cases an inner lower lip biopsy to check for inflammatory cells.
Sjögren's disease (search) presents as a range of diverse, seemingly unrelated symptoms that often mimic other conditions such as lupus, fibromyalgia, or chronic fatigue syndrome. As a result, it can take years for patients and physicians to piece together a diagnosis. The disease is a systemic autoimmune condition in which the immune system mistakenly attacks the body's own tissues, with targets potentially including the mouth, eyes, skin, joints, vagina, and less commonly the lungs, kidneys, liver, lymph nodes, or nerves.
Inaba noted that even when she suspected Sjögren's herself, one doctor she was seeing "wouldn't give me the Shirmer's test…I kept asking, and he kept saying no. Eventually, I found a doctor that gave me the test and then that led me to finding my rheumatologist."
The Mental Health Toll of an Invisible Disease
Beyond the physical symptoms—chronic dry eyes, significant fatigue, pain, dry mouth, and dry skin—Inaba has spoken candidly about the psychological burden. After years of having her symptoms overlooked and minimized, she went through a period of anxiety and depression.
"Having a disease that's invisible, that people didn't really believe, that people didn't take seriously, it was hard," Inaba explained. "I also maybe sometimes didn't take myself seriously if I'm 100 percent honest with you. Sometimes you don't even believe it yourself."
She emphasized that women, in particular, face additional challenges in getting doctors to listen and understand their symptoms. "As women, we're often gaslit in doctor's appointments," Inaba said.
The SJÖUT Campaign and Patient Advocacy
This spring, Novartis launched the SJÖUT for Sjögren's disease (search) education campaign in partnership with Inaba. Through a video series on SjoutForSjogrens.com, the campaign helps people living with Sjögren's connect the dots of their symptoms, find their voice, and advocate without apology. The campaign bears the statement: "People living with Sjögren's disease are tired of not being heard."
In the video series, Inaba sits down with Janet Church, President and CEO of the Sjögren's Foundation, fellow Sjögren's patient Jennifer Snook, and rheumatologist Dr. Tara Rizvi. Together, they share moments they stayed silent, symptoms they minimized, and conversations they avoided, while offering tips on how undiagnosed and diagnosed patients can better advocate for themselves.
"I needed a guide on how to live with Sjögren's," Inaba said. "I didn't get that from the medical system. I got it from other patients."
Disease Management and Looking Forward
There is currently no cure for Sjögren's disease (search), so treatment focuses on managing symptoms. Artificial tears may help with dry eyes, sugarless gum or candy or medications can address dry mouth, and regular dental care can reduce the risk of dental complications. Nonsteroidal anti-inflammatory drugs, low-dose steroids such as prednisone, and disease-modifying anti-rheumatic drugs may help alleviate joint pain.
Inaba indicated that while her disease is not necessarily controlled, "because we never have that much control, but my health is better managed. I can start to look forward again, because for a long time, I couldn't."
She has assembled a care team that works in concert to optimize her health and has become fluent in reading her own labs and charts—a level of health literacy she developed out of necessity. "I learned to trust myself and what my body is telling me," she said. "It's been a radical re-prioritization of my life. I'm grateful for it."
Inaba's message to others navigating similar challenges is direct: "Trust yourself and your body. Ask questions. Keep searching for the right doctor. Find your people." She added, "I wouldn't be who I am without Sjögren's. It taught me to trust myself and advocate for myself. Now I want to help others do the same."