Carrie Ann Inaba Talks About Her Challenges With Sjögren’s Disease

Inaba Mentioned How Sjögren’s Disease Is Often Misunderstood

“It is a often misunderstood autoimmune disease that is not recognized by a lot of people, including doctors,” Inaba lamented to me recently. “I think spreading awareness about Sjögren’s disease is really important.” Even though, Sjögren’s disease is the second most prevalent rheumatic autoimmune disease affecting as many as four million people in the U.S., according to the Sjögren’s Foundation, it’s still known as an “invisible disease.”

That’s not because the disease will give you invisibility superpowers like Sue Storm of The Fantastic Four. No, this unfortunate moniker represents the lack of attention to and awareness of the disease. For example, try saying “Sjögren’s” at a cocktail party or Happy Hour and see how many people respond with “Show what?” Heck, my autocorrect even tried to convert Sjögren’s to Shogun’s.

Inaba’s Sjögren’s Disease Symptoms Went On For A Decade Before Diagnosis

In fact, those with Sjögren’s disease may not even be aware that they have disease themselves. “It’s hard to be diagnosed with Sjögren’s disease,” Inaba expressed. “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 added, “It was unyielding, unpredictable and changed my life.”

At first she thought the pain was due to dancing injuries, because dancing is what the now 58-years-of-age Inaba has been doing since three-years-of-age. She was, for example, one of the “Fly Girls” on the TV series In Living Color from 1990 to 1992. “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.”

That led her to literally and figuratively dance around the situation, searching for explanations for a decade before she finally got the right diagnosis in 2013. Until then even the doctors that she was seeing weren’t really seeing what was going on and failed to put her seemingly unrelated symptoms together. Plus, as Inaba mentioned, “A lot of times, when you go to the doctor, you don’t always mention all of your symptoms.”

An Opththalmology Visit Led To Inaba Getting Diagnosed With Sjögren’s Disease

It was an ophthalmologist who finally saw what might be going on, given Inaba’s dry eyes and dry corneas. “My corneas were getting scratched, and so an ophthalmologist suggested I go to a rheumatologist,” Inaba recalled. “The rheumatologist ran specific tests that only rheumatologists run, and I was diagnosed with Sjögren’s disease.” She added, “It was about after 10 years of searching for answers, and my story is not uncommon.” Moreover, the diagnosis came “right around when my father passed away, so it was a very intense year,” as Inaba related.

Diagnosing Sjögren’s disease isn’t super straightforward either. There isn’t a single test that tells you whether you have it or not. Instead, typically, doctors have to run different tests and combine that with your history and exam findings. These can include:

• Eye tests: A Schirmer tear test involves placing a small piece of filter paper under your lower eyelid to check the amount of tears you are making. A doctor can also use a slit lamp to examine the surfaces of your eyes.
• Blood tests: These can check for particular antibodies like Anti-SSA (Ro) and Anti-SSB (La) ones, as well as ANA and rheumatoid factor.
• Saliva gland imaging: A sialogram or salivary scintigraphy may show how much saliva your salivary glands are producing.
• Inner lower lip biopsy: This entails taking a small tissue sample from this location and checking the sample for certain inflammatory cells.

The doctor then has to be all Sherlock Holmes-like and piece everything together. You have to have a doctor who has enough experience, expertise and empathy to essentially read the room—like a good rheumatologist. Otherwise, Sjögren’s disease can easily be mistaken for a bunch of other things.

Speaking of mistaken, Sjögren’s disease is kind of a case of mistaken identity— where your immune system somehow thinks your normal body tissue is something to be attacked. Your immune system then generates a bunch of weapons like antibodies and inflammatory cells. The targets can end up being the tissues in your mouth, eyes, skin, joints or vagina or less commonly your lungs, kidney, liver, lymph nodes or nerves. That’s why a lot of dryness in your eyes, skin, mouth, vagina or coughs, difficult swallowing, joint problems, skin rashes, fatigue and flat out exhaustion are common symptoms. You can also see complications like yeast infections, tooth cavities, vision problems, bronchitis, pneumonia, hepatitis, cirrhosis, peripheral neuropathy and even lymphoma.

Inaba Mentioned The Mental Health Challenges Of Sjögren’s Disease

You could see how all of those different symptoms can seem unrelated. That can make it even harder for others to relate to someone with Sjögren’s disease. “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.”

Inaba emphasized the importance of finding the right doctor who will listen to you and mentioning all the symptoms that you are having, even if they initially seem unrelated. “We need to speak up,” she said. “And as women, we’re often gaslit in doctor’s appointments.” Yes, as I’ve written about in Forbes before, women and racial/ethnic minorities can face additional challenges in getting doctors to listen and understand them. That can lead to delays in diagnosing all sorts of conditions, ranging from perimenopause to ADHD to cancer.

For example, even though Inaba had dry eyes and scratched corneas and kept saying, “I think it’s Sjögren’s,” a doctor that 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.”

How Inaba Is Managing Sjögren’s Disease

There is currently no cure for Sjögren’s disease, so treatment entails managing the different symptoms. For example, artificial tears may help with the dry eyes. Sugarless gum or candy or medications can help with the dry mouth. 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 the joint pain.

It helps to get properly heard, diagnosed and treated. Inaba has been advocating for building more of a community for those with Sjögren’s disease. She’s partnered with Novartis for the Sjöut campaign that bears the statement, “People living with Sjögren’s disease are tired of not being heard.” She said that shifting the name from Sjögren’s syndrome to Sjögren’s disease has also helped more people realize that it’s a disease.

“It is so interesting how this whole campaign around Sjögren’s disease has helped me in a lot of ways, find words and understand a lot of things about life” Inaba said. “Helping people understand my journey is kind of like just being human, right? Helping somebody else understand your journey. We all have a right to speak out, and then be compassionate towards each other, and listen and know that we’re all going through something.”

Getting the proper diagnosis and treatment has allowed Inaba to return to a lot of the things that she is passionate about, such recently signing a first look deal with ABC. A first-look deal is when a creator signs a contract with a studio or network to grant it exclusive rights of first refusal to produce and distribute his or her project. The studio or network then will give the creator a holding fee or development funds.

Inaba indicated that while her Sjögren’s 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.” In other words, with her Sjögren’s disease better managed, Inaba can better show ABC and others what else she can do.