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Céline Dion was diagnosed with stiff-person syndrome. What to know about the rare neurological disorder forcing her to leave the stage

Céline Dion in New York City in 2020.
Gotham/GC Images/Getty Images

Céline Dion announced Thursday she was diagnosed with a rare neurological disorder that has affected her ability to walk—and to the singer’s disappointment—her vocal cords. In a tearful message on her Instagram, the “My Heart Will Go On” artist said she has to postpone her European tour dates set for 2023. 

“I have to admit, it’s been a struggle,” she said in the video message. “All I know is singing. It’s what I’ve done all my life, and it’s what I love to do the most.” 

Dion was diagnosed with stiff-person syndrome, a disorder that affects “something like one in a million people,” she noted to fans. She said she always gives “one hundred percent” when performing onstage, but won’t be able to right now owing to her condition.

“While we are still learning about this rare condition, we now know this is what’s been causing all of the spasms that I’ve been having,” she said. “Unfortunately, these spasms affect every aspect of my daily life, sometimes causing difficulties when I walk and not allowing me to use my vocal cords to sing the way I’m used to.”

What is stiff-person syndrome?

Stiff-person syndrome affects the brain and spinal cord and progressively worsens, with some people having mild symptoms and others experiencing more debilitating ones. People may experience muscle stiffness and spasms as common symptoms of the neurological condition, according to the National Center for Advancing Translational Sciences, and experts think it may be caused by an autoimmune response. As symptoms progress, people may experience hunching over, owing to the spine being affected. It affects an estimated fewer than 5,000 people in the U.S., and the onset age is usually in adulthood. 

“People with SPS often have heightened sensitivity to noise, sudden movements, and emotional distress, which can set off muscle spasms,” notes the National Institutes of Health’s Genetic and Rare Diseases Information Center.  

There is no cure for stiff-person syndrome, although sedatives, steroids, and muscle relaxants can help alleviate symptoms, according to Yale Medicine

The award-winning performer has been dealing with her health condition for a “long time,” she said. 

“While we are still learning about this rare condition, we now know this is what’s been causing all of the spasms I’ve been having,” Dion said in an Instagram video.
Instagram/Celine Dion via REUTERS

“I have a great team of doctors working alongside me to help me get better and my precious children who are supporting me and giving me hope,” she said. “I’m working hard with my sports medicine therapist every day to build back my strength and my ability to perform again.”

For someone who loves what she does, Dion’s disappointment about having to leave the stage is evident, although her optimism has prompted her to say she “can’t wait to be onstage” again. 

“I have no choice but to concentrate on my health at this moment, and I have hope that I am on the road to recovery,” she says. “This is my focus, and I’m doing everything that I can to recuperate.”

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