Why Carrie Ann Inaba’s Autoimmune Disorder Went Undiagnosed For Years

• Dancing with the Stars judge Carrie Ann Inaba is opening up about her journey living with Sjögren disease.
• Sjögren disease is an autoimmune disorder that affects the glands responsible for producing saliva and tears.
• Inaba lived with symptoms for years before receiving a diagnosis.

Dancing with the Stars (DWTS) judge Carrie Ann Inaba began experiencing a variety of symptoms she couldn’t explain in her 20s. They included corneal damage to her eyes, dry mouth, fatigue, brain fog, and pain throughout her body.

“It’s like my body was just not working,” Inaba told Healthline, “All the things I could do, I couldn’t do anymore. And I couldn’t understand what it was.”

She began researching her symptoms and found they were commonly associated with the autoimmune condition Sjögren disease. 

However, when she brought up the condition to her ophthalmologist, they shrugged her off, something she said is common for people living with Sjögren disease.

“Sjögren disease…is something that people do not talk about…a lot of people don’t know how to pronounce it, don’t know much about it,” she said.

Eventually, after years of living with symptoms, Inaba received a referral to a rheumatologist who diagnosed her with Sjögren’s disease in 2013.

“I was grateful…so weird to say, but at least now I knew what I was dealing with. I knew the direction that I needed to search for more answers,” Inaba said.

Sjögren’s disease can be challenging to diagnose and may take several years from the onset of symptoms to receive a definitive diagnosis, said Nina Couette, DO, rheumatologist and assistant professor at The Ohio State University Wexner Medical Center and College of Medicine.

The main reason for this is that the hallmark symptoms, including persistent dry eyes and dry mouth, are common and can result from many different causes, including menopause, medication side effects, fibromyalgia, and other autoimmune diseases such as rheumatoid arthritis or lupus.

“Because these symptoms overlap with so many other conditions, identifying Sjogren disease often requires careful evaluation and specialized testing,” Couette told Healthline.

Physical and mental impacts of living with Sjögren disease

One of the most difficult realities of living with Sjögren disease for Inaba is how it impacts her ability to dance—her “first love.”

In 2013, her symptoms became debilitating, and she also experienced a physical injury. Both caused her to stop dancing.

“It broke my heart, honestly,” she said. “I was having widespread pain throughout my body, and the fatigue was so immense. I was having so many flare-ups because I wasn’t managing my health, because I didn’t understand the condition.”

Living with these symptoms soon began taking a mental toll, too.

“Something that people don’t often talk about with Sjögren disease is the depression that comes along with it, and anxiety,” Inaba said. “The uncertainty of ‘When is a flare-up going to happen?’ The uncertainty of, ‘Do I have energy to get through the day today?’ You go on a high alert when you live with this condition, and it’s so challenging.”

The impact of the disease often extends far beyond what people can see, said Couette.

“Sjogren’s is a complex systemic autoimmune disease that can affect multiple organs and body systems,” she said. “In addition to dryness, patients may experience profound fatigue, brain fog, joint and muscle pain, nerve-related symptoms, and involvement of organs such as the lungs, kidneys, or nervous system.”

Learning to manage Sjögren disease symptoms takes time

Over time, Inaba learned how to best care for her body and mind.

“Energy management is my number one focus at all times,” she said. “I’m constantly monitoring for how my body is reacting to things, and I really listen to my body.”

She believes learning to “listen” to her body is one of the unexpected gifts of living with the disease.

“I have really learned to pay attention to my body,” she said. “When it tingles about something, that’s a message, and I listen to it. If I’m starting to feel uncomfortable, that means this situation is not right for me, and I need to step away from it.”

Her daily wellness routine includes yoga and mindful movement, such as rotating her joints to keep synovial fluid moving through her body. She also leans on acupuncture, Reiki, bodywork, and red-light therapy, and she sleeps on a heating pad.

“Self-care and lifestyle measures play an important role in managing Sjögren disease,” said Couette. “[Adopting] a healthy lifestyle can help patients feel their best.”

She said staying well hydrated, prioritizing adequate sleep, engaging in regular physical activity, managing stress, and following a balanced, nutritious diet can all contribute to improved overall well-being and quality of life.

Medications also help Inaba manage symptoms

While there is currently no FDA-approved treatment specifically for Sjögren disease, Couette said many current therapies focus on symptom management, particularly for dry eyes and dry mouth.

Over-the-counter medications, such as cevimeline and pilocarpine, help stimulate saliva production, and immunosuppressive medications are available for those with systemic or organ involvement.

“I do a lot,” Inaba said, “because it takes a lot to manage Sjögren disease. [But] it is possible to live a good life.”

Couette agrees. She said it’s an especially exciting time in Sjogren disease research because several investigational therapies, including ianalumab and nipocalimab, are being studied in clinical trials and have shown promising results.

“While these treatments are still under review, they offer hope for future disease-modifying therapies that may address the underlying autoimmune process rather than just symptoms,” Couette said.

Why Inaba is raising awareness about Sjögren disease

Inaba is turning her journey with Sjögren disease into advocacy.

She has partnered with Novartis for its SJÖUT for Sjögren’s campaign, which shares educational information and patient stories.

She was drawn to the campaign because when she was first diagnosed, she felt alone and yearned for a community.

“I reached out online and found a community because I didn’t know who to talk to. My friends didn’t understand it. How could they? They haven’t experienced it. I needed people who were living with it.”

In addition to support from doctors, she said having a community that understands her condition helps her thrive during difficult and happy times.

Recently, Inaba has been sharing joyful news: she is back on the dance floor.

“I’m very grateful about that,” she said.

She is looking forward to judging the next season of DWTS in the fall.

“[I] think the conversation around dance has expanded tremendously, which warms my heart as a dancer, seeing how dancing is now a road and a pathway to incredible success is really wonderful, you know?” she said.

She compares spreading awareness around dance to her work with Novartis.

“It’s about creating exposure and having people talk about it,” said Inaba. “[People] didn’t talk about dancing back [when DWTS started], but now they do. I want people to feel the same way about Sjogren’s. It’s like, we didn’t know what it was, but now, oh, yeah, [we know about] Sjogren’s.”