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Celine Dion’s health battle explained - what is stiff person syndrome?

The "My Heart Will Go On" singer was diagnosed with Stiff Person Syndrome in 2022


celine dion health issues© Photo: Getty Images
Jenni McKnight
US Lifestyle Editor
Updated: April 23, 2024
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Celine Dion has been keeping a low profile ever since she stepped out of the spotlight in October 2021 after revealing she was suffering from a debilitating health condition - and one year later, she revealed the rare disease she has finally been diagnosed with.

The singer shared the news with fans in December 2022 that she has been diagnosed with a rare neurological disorder called stiff person syndrome, which had been inducing the muscle spasms she'd dealt with that forced her to withdraw from performing. Her worsening health meant she canceled her Las Vegas residency and postponed the North American and European legs of her Courage world tour.

Sharing a video on social media, which you can watch below, Celine said that stiff person syndrome impacts "one in a million people," before explaining how she is treating the condition.

WATCH: Celine Dion shares heartbreaking message as she cancels shows due to health problems

What is wrong with Celine Dion?

Celine is battling a rare neurological disorder called stiff person syndrome. Speaking of her diagnosis, she said: "I've been dealing with problems with my health for a long time, and it's been really difficult for me to face these challenges and to talk about everything that I've been going through."

While Celine is recovering at her $1.2 million Las Vegas home, her sister Claudette shared an emotional - but positive - update on the famous singer.

Chatting to Le Journal de Montreal, Claudette said: "I am confident that life will give her back what she gave because she is an extremely intelligent woman, so very generous and talented and in love with life as well."

Celine Dion in a powder blue top looking serious© Getty Images
Celine battled severe muscle spasms before her diagnosis

She added: "Rather than crying over her fate, I try to send her positive vibes in the hope that one day she will go back on stage. I truly believe in the power of love. I wish her the best of luck, that's for sure. She is surrounded by specialists as she continues to recover."

What is stiff person syndrome?

Stiff person syndrome is a rare neurological disorder. Symptoms include muscle rigidity in the trunk and arms, often triggered by noise, touch, and emotional distress. Celine's condition is characterized by muscle spasms.

People with stiff person syndrome suffer from frequent falls because they lack defensive reflexes to save themselves. Sufferers are often unable to walk or move, and it's twice as common in women than in men.

What is stiff person syndrome?

Stiff person syndrome is a rare neurological disorder.

Symptoms of stiff person syndrome include muscle rigidity in the trunk and arms, often triggered by noise, touch and emotional distress. Celine's condition is characterised by muscle spasms.

People with stiff person syndrome suffer from frequent falls, because they lack defensive reflexes to save themselves. Sufferers are often unable to walk or move, and it's twice as common in women than in men.

It's not known what causes the disorder, and it's often misdiagnosed as Parkinson’s disease, multiple sclerosis, fibromyalgia, psychosomatic illness, or anxiety and phobia.

The disorder doesn't have a cure, though anti-anxiety drugs, muscle relaxants, and anti-convulsants. Pain relief can also improve symptoms.

When did her health battle start?

Celine first publicly revealed she was suffering from poor health in October 2021. At the time, she revealed she was battling "severe and persistent muscle spasms" so was forced to delay her Las Vegas shows, and she's not taken to the stage since.

When Celine canceled the North American leg of her tour in January 2022, she admitted that she thought she would have been in better health by then. "I was really hoping that I'd be good to go by now, but I suppose I just have to be more patient and follow the regimen that my doctors are prescribing," she said.

Celine Dion performing at the Macys Thanksgiving Parade in 2019© Getty Images
Celine canceled her Vegas residency and world tour

In her initial statement, Celine said she was postponing her Las Vegas show until March 22 due to "unforeseen medical symptoms".

"I'm heartbroken by this. My team and I have been working on our new show for the past eight months, and to not be able to open this November saddens me beyond words," she said at the time.

"I feel so bad that I'm letting them down, and I'm especially sorry for disappointing all the fans who've been making their plans to come to Las Vegas. Now, I have to focus on getting better… I want to get through this as soon as I can. - Celine xx." 

celine dion performing on stage in black dress© Getty Images
Celine hasn't performed since 2021

How is Celine treating her stiff person's syndrome?

Celine gave fans an update as to how life is going with her illness - and the intensive therapy that goes into treating it. 

She told Vogue France: "Five days a week I undergo athletic, physical and vocal therapy. I work on my toes, my knees, my calves, my fingers, my singing, my voice... I have to learn to live with it now and stop questioning myself. At the beginning I would ask myself: why me? How did this happen? What have I done? Is this my fault?"

I haven’t beat the disease, as it's still within me and always will be. I hope that we'll find a miracle, a way to cure it with scientific research, but for now I have to learn to live with it," she said.

When will she perform again?

As of now, Celine has cancelled all her upcoming tour dates up until April 2024. Her website currently reads: "With a sense of tremendous disappointment, Celine Dion's Courage World Tour today announced the cancellation of all remaining dates currently on sale for 2023 and 2024." 

In a personal statement, Celine said: "I'm so sorry to disappoint all of you once again. I'm working really hard to build back my strength, but touring can be very difficult even when you're 100%. It's not fair to you to keep postponing the shows, and even though it breaks my heart, it's best that we cancel everything now until I'm really ready to be back on stage again."

Celine Dion performs on opening night of world tour Courage in 2019© Getty Images
Celine has stiff person syndrome

She continued: "I want you all to know, I'm not giving up… and I can't wait to see you again!" 

Celine's Las Vegas residency also remains uncertain, as no new dates for shows have been revealed yet either.

What has Celine's sister said about her condition?

Celine's sister Claudette recently spoke to Canadian site showbizz.net to give an update on her sister's treatment. Sharing a glimpse inside her loved one's journey, Claudette said: "I know she went to Denver a couple of times because there are great researchers there and I'm crossing my fingers. That's all we can do. Tell her how much we love her and that we wish her all the best." 

Meanwhile, during a televised appearance with Le Journal de Montreal, Claudette said: "When I call her and she's busy, I speak to my sister Linda who lives with her and tells me that she's working hard. She's listening to the top researchers in the field of this rare disease as much as possible." 

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"I honestly think that she mostly needs to rest. 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."

And in an exclusive interview with HELLO! Canada, Claudette shared a hopeful update. Opening up, she said: "She's doing everything to recover… She's a strong woman."

Latest appearances

While Celine is still being treated for her debilitating illness, she made her first public appearance in years in October 2023, as she attended the hockey game between the Vegas Golden Knights and the Montreal Canadiens in Las Vegas. She reportedly even “sang a few notes”, according to the vice president of hockey communications for the Canadiens, Chantal Machabée.

Celine also made an appearance at the Grammys alongside her son René-Charles to announce the Album of the Year award – which she won 27 years ago. Her appearance prompted a standing ovation from the audience.

In an emotional moment, she said: "I love you right back," and adding: "When I say that I'm happy to be here, I really mean it, from the bottom of my heart."

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