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Longtime “Dancing with the Stars” judge Carrie Ann Inaba is spreading awareness about a condition she’s been living with for decades.
The dancer and TV personality has recently been transparent about her journey with Sjogren’s disease – an autoimmune condition that can start with seemingly small symptoms but has the potential to become debilitating.
Inaba, 58, was rushed to the hospital last week after her condition triggered a medical emergency mid-flight while traveling to New York City.
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In an Instagram post featuring a video of Inaba being transported in an ambulance, she described how she “suddenly felt quite ill.”
“And while it seemed like food poisoning, I also suddenly broke out into a cold sweat, got dizzy and my arms went numb,” she wrote.
“Like many people who live with autoimmune disease, I travel with a health tool kit and am prepared for the worst, but this scared me.”
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In an interview with Fox News Digital, Inaba revealed that she’s been silently struggling with the disease for years, since first developing eye problems when she was younger.
“My eyes were really, really dry and I kept having injuries to my corneas,” she said.
After consulting her ophthalmologist, who brushed off her symptoms, Inaba met with a rheumatologist who directed her to a Sjogren’s specialist.
Following extensive bloodwork and a dry-eye test, Inaba was diagnosed with Sjogren’s disease in 2013 – more than 10 years after she first experienced symptoms.
What is Sjogren’s disease?
Sjogren’s is a chronic, systemic autoimmune disease that can affect different parts of the body. If left untreated, the condition can worsen over time, in some cases causing damage to the lungs, kidneys and other organs, according to medical experts.
An estimated four million people in the U.S. are living with Sjogren’s, 90% of whom are women.
In a survey of more than 3,500 adults living with the disease, 48 different symptoms were reported over the course of a year, per data from Sjout for Sjogren’s.
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Sjogren’s can show up differently for everyone, making it difficult to diagnose.
In Inaba’s case, after the initial dry-eye symptoms, she began suffering from “a lot of pain” in her neck and shoulders. As a dancer, this was difficult to differentiate from the normal aches and pains, she shared. Extreme fatigue was another symptom she experienced.
“I had no energy to move forward with things, which is unlike me,” she said. “I’ve always been a go-getter … I was physically active my whole life. And during this chapter, when I was starting to figure out something was wrong, there were all these symptoms, and I didn’t understand how they were related.”
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Other symptoms can include dry mouth, brain fog, anxiety, swollen glands and lymph nodes, skin rashes, fevers and night sweats. People may also notice numbness, tingling or burning in the hands or feet. Internal organ complications can also occur.
Managing the disease
Inaba said she relies on a variety of practices to manage her symptoms, including keeping her eyes and environment moist.
“I always have a lot of drinks. I’m always spraying things in the air to get moisture in the air. I have a humidifier I sleep with,” she told Fox News Digital.
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“I also do lots of meditation and reiki and body work to make sure I don’t get too flared up, because pain is always with me. I live with pain 24/7.”
Inaba said she’s learned how to listen to her body to tap into what it needs, especially taking time to rest surrounding big events.
“I know that more than likely, I might be sick and I might have a few down days afterwards, and it’s worth the risk,” she said. “If I don’t have to be in a crowd, I won’t, because I want to take care of my health and prioritize myself.”
“Don’t let people tell you it’s not real.”
For others who are living with Sjogren’s or experiencing symptoms, Inaba’s advice is to keep “careful track” of the warning signs, to recognize when something doesn’t feel right and to advocate for proper care.
This is the message behind the Sjout for Sjogren’s campaign, an awareness movement that Inaba hopes will help spread more knowledge about the disease and reduce stigma.
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“We want people to respect that it is a complicated systemic autoimmune disease that needs care,” she said. “There is no FDA-approved treatment at this time, so it’s about managing symptoms.”
“It’s important to also have a community – and part of this campaign is about building a community.”
The most important thing Inaba wants people to know about Sjogren’s is that “it’s real.”
“It’s an invisible illness,” she said. “I know when I’m out there doing whatever show I’m doing, you don’t think I’m sick, but I pay a price for doing that.”
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“It’s sometimes a lonely and isolating disease – and so I want people to know they can reach out … I want people to feel confident enough to shout about what they’re going through.”
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She added, “Don’t let people tell you it’s not real. And have patience for the friends who are trying to understand, but can’t quite. Because, most likely, you don’t believe it unless you’re actually experiencing it.”
Fox News Digital’s Stephanie Giang-Paunon contributed to this report.
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