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Celine Dion says dealing with incurable diagnosis ‘one of the hardest experiences’ of her life

‘My Heart Will Go On’ singer sent words of encouragement to others living with stiff person syndrome

Ellie Muir
Sunday 17 March 2024 10:34 EDT
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Celine Dion surprises hockey team in dressing room

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Celine Dion has said that dealing with her stiff person syndrome (SPS) diagnosis has been one of the “hardest experiences” of her life.

The Canadian singer, 55, has said she is “deeply grateful” for the support from her family and fans as she marked SPS Awareness Day by sharing a photo of herself with her three sons on Instagram.

In December 2022, Dion revealed that she had been diagnosed with SPS – an autoimmune and neurological disorder that causes rigidity in the torso and limbs – and subsequently cancelled her world tour.

To mark SPS Awareness Day, she sent words of encouragement to others living with the condition and said she is determined to one day return to the stage and “live as normal of a life as possible”.

The pictures show Dion smiling with her arms wrapped around two of her children while the third is sitting in front of her as they all pose on a racing podium with trophies.

“Today the world recognizes International SPS Awareness Day”, she wrote.

“As many of you know, in the fall of 2022, I was diagnosed with Stiff Person Syndrome (SPS).

“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.

“I am deeply grateful for the love and support from my kids, family, team and all of you!

“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! Love Celine xx...”

The “My Heart Will Go On” singer received a standing ovation when she made a rare public appearance at the Grammy Awards last month to present the album of the year prize.

Before presenting the Album of the Year Grammy to Taylor Swift for Midnights, the Canadian star took a moment to acknowledge the music legends Diana Ross and Sting, who had presented her with the same award 27 years ago.

“Thank you all, I love you right back,” she told the crowd.

“When I say I’m happy to be here, I really mean it from my heart. Those who have been blessed enough to be here at the Grammy Awards must never take for granted the tremendous love and joy that music brings to our lives and to people all around the world.”

Celine Dion at the Grammy Awards
Celine Dion at the Grammy Awards (Getty Images for The Recording A)

The main symptoms of SPS are rigidity in the torso and limbs, muscle stiffening and spasming. Periods of muscle spasming can be triggered by environmental stimuli like loud noises and can calm down once the stimulus has gone.

There is no cure for SPS, but there are ways for the disease to be treated, including through the use of muscle sedatives and relaxants. Physical and occupational therapy is also a treatment route for people with SPS.

With additional reporting from agencies.

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