Céline Dion says she may never tour again amid battle with stiff-person syndrome. Here’s what to know

Céline Dion is learning how to live with stiff-person syndrome, a rare neurological disorder she was diagnosed with in 2022 that forced her to put performing on the back burner.

The condition, which affects her vocal cords as well as her ability to walk.

In an interview with Vogue France for their May 2024 issue, Dion is asked her thoughts on whether she will perform again: “I don’t know…My body will tell me. On the other hand, I just don’t want to wait,” she says.

For four years, Dion says she’s been debating whether or not she will be ready again. As things stand, she says she cannot give a definitive answer, as each day is different from the next.

“It’s hard, I’m working very hard and tomorrow will be even harder. Tomorrow is another day. But there’s one thing that will never stop, and that’s the will. It’s the passion. It’s the dream. It’s the determination,” Dion tells Vogue

The “My Heart Will Go On” singer shared her diagnosis in a tearful Instagram video in 2022. At that time, she said, “I have to admit, it’s been a struggle. All I know is singing. It’s what I’ve done all my life, and it’s what I love to do the most.” 

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. 

“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

“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,” Dion said in 2022.

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

Dion’s new normal includes “athletic, physical, and vocal therapy” five days a week, she tells Vogue.

“I work on my toes, my knees, my calves, my fingers, my singing, my voice,” Dion says.

Early on in her diagnosis, Dion said she questioned what she did to deserve the condition. Now, she says life doesn’t give you answers to these difficult questions, “You just have to live it.”

“The way I see it, I have two choices. Either I train like an athlete and work super hard, or I switch off and it’s over, I stay at home, listen to my songs, stand in front of my mirror and sing to myself,” Dion says.

“I’ve chosen to work with all my body and soul, from head to toe, with a medical team. I want to be the best I can be.”

The support she receives from her family, fans, and team are what helps Dion most in difficult times, she says in the interview. She also recognizes she is lucky to have good doctors and treatment options.

“I have those means, and this is a gift. What’s more, I have this strength within me. I know nothing is going to stop me,” Dion says.

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