Celine Dion No Longer Has "Control Over Her Muscles," Sister Reveals in Heartbreaking Update

Claudette Dion shared the latest on the singer's rare diagnosis.

A year after Celine Dion publicly shared her diagnosis with Stiff Person Syndrome, her sister, Claudette Dion, has shared an update on her condition. According to Claudette, the iconic singer doesn't have "control over her muscles" anymore, but is still hoping that someday she will be able to return to the stage. Claudette also explained why the rarity of the condition makes treatment challenging and thanked fans for the outpouring of support that her younger sister has received.

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In December 2022, Celine revealed that she had been diagnosed with Stiff Person Syndrome in a video posted on Instagram in which she also announced that her tour was being suspended.

"Recently, I've been diagnosed with a very rare neurological disorder called the Stiff Person Syndrome, which affects something like one in a million people," Celine said. "While we're still learning about this rare condition, we now know this is what's been causing all of the spasms I've been having." She added that the disorder affected her vocal cords and made it difficult to walk.

According to Johns Hopkins Medicine, Stiff Person Syndrome (SPS) is "a rare autoimmune neurological disorder that most commonly causes muscle stiffness and painful spasms that come and go and can worsen over time." There is no cure for the disorder, but "working with a specialist and maintaining symptom control can make it easier to live with the condition." Johns Hopkins notes that Stiff Person Syndrome is "thought to affect one to two people in a million. However, SPS experts now consider the syndrome to be a spectrum of disorders, which means it is likely more common than originally thought, although still rare."

In a new interview with Quebec publication 7 Jours (via the Daily Mail), Claudette shared of Celine, "She's working hard, but she doesn't have control over her muscles. What breaks my heart is that she's always been disciplined. She's always worked hard. Our mother always told her, 'You're going to do it well, you're going to do it properly.'" She added, "It's true that in both our dreams and hers, the goal is to return to the stage. In what capacity? I don't know."

Claudette said that research is limited because of how rare SPS is. "The vocal cords are muscles, and the heart is also a muscle. This is what comes to get me," she added. "Because it's 1 out of a million case, the scientists haven't done that much research because it didn't affect that many people."

Celine's sister also said that the family's charity for Québécois schoolchildren, Foundation Maman Dion, has received overwhelming support. "If only you knew the number of phone calls the Foundation gets about Celine! People tell us they love her and they're praying for her. She gets so many messages, presents and blessed crucifixes."

Claudette shared an earlier update about Celine with Le Journal de Montréal in August. "We can't find any medicine that works, but having hope is important," she said (via Page Six). She also expressed that Celine did the right thing by halting her tour.

"I honestly think that she mostly needs to rest," Claudette explained. "She always goes above and beyond, she always tries to be the best and top of her game. At one point, your heart and your body are trying to tell you something. It's important to listen to it."

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Lia Beck
Lia Beck is a writer living in Richmond, Virginia. In addition to Best Life, she has written for Refinery29, Bustle, Hello Giggles, InStyle, and more. Read more
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