Celine Dion doc aims to ‘raise awareness’ of stiff person syndrome

‘I wanted to document this part of my life … to help others who share this diagnosis,’ Grammy winner says

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A documentary about Celine Dion that will follow her battle with stiff person syndrome is set to be released by Amazon MGM.

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Directed by Oscar-nominated filmmaker Irene Taylor, the career-spanning doc will capture the music icon’s “never-before-seen private life” as it “takes viewers on a journey inside Celine’s past and present as she reveals her battle with Stiff Person Syndrome (SPS) and the lengths she has gone to continue performing for her beloved and loyal fans.”

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“This last couple of years has been such a challenge for me, the journey from discovering my condition to learning how to live with and manage it, but not to let it define me,” Dion said in a statement. “As the road to resuming my performing career continues, I have realized how much I have missed it, of being able to see my fans.  During this absence, I decided I wanted to document this part of my life, to try to raise awareness of this little-known condition, to help others who share this diagnosis.”

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Céline Dion brought her Courage World Tour to the Bell Centre in Montreal on Feb. 18, 2020. Photo by Dave Sidaway /Montreal Gazette

Last month, Dion’s sister Claudette told a Canadian website that the singer has lost control of her muscles.

Dion’s incurable condition is rare and causes severe and persistent muscle spasms that can strike without notice.

“She’s working hard, but she doesn’t have control over her muscles. What breaks my heart is that she’s always been disciplined,” Claudette told the French-language site 7 Jours. “She’s always worked hard. Our mother always told her, ‘You’re going to do it well, you’re going to do it properly.’”

Claudette added that Dion’s goal is still to return to the stage to perform live in front of her fans, but acknowledged that no one in her family yet knows if and when that will ever happen.

“It’s true that in both our dreams and hers, the goal is to return to the stage,” she said. “In what capacity? I don’t know.”

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Symptoms of the affliction mimic the characteristics of other ailments such as Parkinson’s Disease or multiple sclerosis. The muscle spasms associated with SPS sometimes appear out of the blue and can be triggered by loud noise or emotional distress, according to the Cleveland Clinic.

The muscle spasms can be severe enough to affect mobility and cause a patient to fall. As it progresses, the disease makes if more difficult to walk and falls can become more frequent.

“The vocal cords are muscles, and the heart is also a muscle,” Claudette continued in her interview with 7 Jours. “Because it’s one out of a million … the scientists haven’t done that much research because it didn’t affect that many people.”

But Claudette went on to add that the five-time Grammy winner hasn’t lost hope.

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“There are some who have lost hope because it is an illness that is not known, but if you only knew how many calls we receive … People tell us they love her and pray for her. She receives so many messages, gifts, blessed crucifixes.”

Jennifer Salke, head of Amazon MGM Studios, said that the documentary will highlight Dion’s “extraordinary work ethic and passion” as well as her love for her legions of fans.

“This documentary is a raw, intimate portrayal of a pivotal time in her personal life and career, pulling back the curtain on her journey as she overcomes an unthinkable diagnosis. It’s an honour to be trusted with her story, and we can’t wait to share it with Prime Video audiences around the world,” Salke said in a statement.

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Dion has kept a low profile since announcing she is battling stiff person syndrome in an emotional Instagram video last December. Her appearance in November at a hockey game between the Las Vegas Golden Knights and the Montreal Canadiens marked one of the first times she had been seen in public since her last onstage performance in March 2020.

Celine and the Montreal Canadiens
Singer Celine Dion seen meeting with members of the Montreal Canadiens in Las Vegas Monday night. Photo by Montreal Canadiens /X

In October, Claudette, offered a hopeful update on the singer’s condition.

“I know that morally, mentally, she is strong. She is not depressed at all … she really has the joy of living. We will get through this,” she told the French-language site showbizz.net.

When she shared her tragic news last year, Dion admitted the battle has “been a struggle.”

“The 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 told fans. “I have to admit it’s been a struggle. All I know is singing, it’s what I’ve done all my life.”

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