Celine Dion has detailed the extent of her battle with Stiff Person Syndrome, revealing her symptoms began as early as 2008. The My Heart Will Go On singer, 56, announced her diagnosis to the world in 2022. Speaking to VOGUE France in May, the star admitted she has been dealing with side effects from the rare neurological disorder for the best part of two decades.
Imploring her fans to not ignore any adverse medical symptoms of their own, she said: "It might seem weird to say this, but I was happy when I was told what it was. I was finally going to be able to live with this illness and no longer suffer from it. I hope this won't scare people off [from getting a diagnosis] and will alert them instead.
"It took me 17 years to understand what was going on. I beg of you, don't wait that long!" she said
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.
Celine's secret health battle
First noticing something was awry in 2008 during her Taking Chances world tour, the Canadian superstar said her voice would tremble when she hit the high notes. "I was struggling to control it. I was able to go very high, but then my voice was wracked with kind of spasms. I did what one is meant to do in these days: I went to see a doctor," she recalled.
After being told her vocal cords looked fine, Celine returned home to Las Vegas and embarked upon another five tours after that. She then began to experience muscular stiffness. "I was struggling to move. I had to lean on something to be able to walk," the star said.
The neurological disease, which affects one in a million people, causes severe muscle spasms and impacts motor functions, making public performances a serious challenge.
Seeking the help she needed
It was only when the Covid-19 pandemic hit that Celine was able to put her health first and prioritise really getting to the bottom of her strange symptoms. Holed up in her $1.2 million Las Vegas home with her children René-Charles, 23, and her twins Eddy and Nelson, 13, whom she shares with late husband René Angélil, Celine set about finding the cause.
"I told myself the universe had sent me a sign with Covid: I needed to make the most of this time of rest to discover what was going on," she told VOGUE. "For years and years, I shut my eyes to it. I hid it from my friends, my family, my children… I held out for as long as possible. I needed to stop being so brave. I needed to take care of it."
Reflecting on what her Amazon Prime documentary taught her, Celine mused: "What is my purpose in life? To be a singer? A spokesperson for stiff person syndrome? A mother? Or all this at the same time? Today marks the beginning of the rest of my life. I've never sung this song before. But it's going to be the most important song of my life."
Celine's Stiff Person journey
In October 2021, Celine concerned fans worldwide by revealing she would be delaying her Las Vegas shows due to "severe and persistent muscle spasms". This was followed by the cancellation of the North American leg of her Courage world tour in January 2022, and later the axing of her European dates.
In December 2022, Celine bravely announced her diagnosis to the world, telling fans via a moving video that she was suffering from Stiff Person Syndrome.
The star's career took a backseat, refraining from public appearances as she focused on her health,
Since December 2024, Celine has slowly been making a return to the limelight. She "sang a few notes" when she made her first public appearance in over three years last winter.
Celine made a grand return to the stage during the Grammys in February, receiving a standing ovation from the audience when she made a surprise appearance to present Taylor Swift with the Album of the Year award. She has also been pictured with her teenage sons on a number of occasions, including at The Rolling Stones concert in Vegas.
Celine's treatment
Celine previously 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 beaten 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.
Family support
Celine's sister Claudette has been supporting her sister and speaking to Canadian site showbizz.net she gave an update on the star's health. 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."
"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."