‘Grateful for the love’: Celine Dion calls health battle ‘one of the hardest experiences of my life’

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Celine Dion shared a rare photo with her children as she thanked her family and friends for their for their ongoing support as she continues to battle stiff person syndrome (SPS).

The 55-year-old My Heart Will Go On singer announced she had been diagnosed with SPS in 2022 after revealing that she had been “dealing with problems with my health for a long time.”

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On Friday night, the Canadian pop music icon marked SPS Awareness Day in a photo shared to her Instagram in which she was seen posing alongside her three boys — Rene-Charles Angelil, 23, and 13-year-old twins Nelson and Eddy Angelil.

“As many of you know, in the fall of 2022, I was diagnosed with Stiff Person Syndrome (SPS),” she wrote. “Trying to overcome this autoimmune disorder has been one of the hardest experiences of my life, but I remain determined to one day get back onto the stage and to live as normal of a life as possible.”

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Dion continued her message by thanking those close to her and sending words of encouragement to others suffering from SPS.

“I am deeply grateful for the love and support from my kids, family, team and all of you!” she wrote. “I want to send my encouragement and support to all those around the world that have been affected by SPS. I want you to know you can do it! We can do it!”

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

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

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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 five-time Grammy winner announced she was suffering from the debilitating illness in 2022 in a tearful message she shared with her fans.

“I’ve always been an open book and I wasn’t ready to say anything before, but I’m ready now,” she confessed. “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.”

As she battled SPS largely away from the public eye, Dion returned to the public eye in November 2023 when she made a surprise appearance at an NHL game between the Montreal Canadiens and the Las Vegas Golden Knights at T-Mobile Arena.

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Dion also presented album of the year at last month’s 66th annual Grammy Awards to Taylor Swift.

Last October, Dion’s sister, 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.

In December, Claudette said Dion’s goal was 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.

“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. “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.”

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But an insider close to Dion described her as a “fighter” in an exclusive chat with Us Weekly in December.

​​“Celine is a fighter. She doesn’t have as much control over her muscles as she did before, but she’s working with doctors and physical therapists to get better,” the source said. “Celine has been taking time to focus on her health but plans to take the stage again once she is given the go-ahead by her medical team.”

A second source told Us that Dion’s diagnosis has “empowered her and changed her mindset.”

Dion will chronicle her battle with SPS in an upcoming documentary coming to Prime Video later this year.

“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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X: @markhdaniell

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