Celine Dion shares how she is coping with Stiff Person Syndrome

LOS ANGELES, CALIFORNIA - FEBRUARY 04: Celine Dion speaks onstage during the 66th GRAMMY Awards at Crypto.com Arena on February 04, 2024 in Los Angeles, California. (Photo by Monica Schipper/Getty Images for The Recording Academy )
Celine Dion first shared her diagnosis of Stiff Person Syndrome in 2022. (Getty Images)

Celine Dion has opened up about living with Stiff Person Syndrome (SPS), a neurological condition she was diagnosed with two years ago.

The Canadian singer, 56, appeared in a new photoshoot and interview with Vogue France, telling the magazine she is "taking it one day at a time". She rarely gives interviews, and this marks her first major interview since she revealed her diagnosis in 2022.

In December, Dion’s sister Claudette Dion told Canadian-French-language magazine 7 Jours that the ‘My Heart Will Go On’ singer did not "have control of her muscles" due to the rare condition.

Dion told the fashion magazine that she is hopeful for the discovery of a "miracle" cure for SPS, but is having to "learn to live with it" for now.

"I haven’t beat the disease, as it’s still within me and always will be," she said. In order to manage the condition, Dion added: "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."

The multiple award-winning singer revealed that she blamed herself when she was first diagnosed with the disease. "At the beginning, I would ask myself: why me? How did this happen? What have I done? Is this my fault?"

But she has since learned that "life doesn’t give you any answers".

"I have this illness for some unknown reason. The way I see it, I have two choices. Either I train like an athlete and work super hard, or I switch off and it’s over, I stay at home, listen to my songs, stand in front of my mirror and sing to myself.

"I’ve chosen to work with all my body and soul, from head to toe, with a medical team. I want to be the best I can be. My goal is to see the Eiffel Tower again!"

Dion first shared that she had been diagnosed with SPS in December 2022, after she was forced to reschedule and cancel tour dates.

In November 2023, she made her first public appearance since her last performance in 2019 when she "sang a few notes" at a sporting event in Las Vegas.

Earlier this year, she made a surprise appearance at the 66th Annual Grammy Awards. She received a standing ovation as she took to the stage to present the final award of the evening, which went to Taylor Swift for Album of the Year.

LOS ANGELES, CALIFORNIA - FEBRUARY 04: (L-R) Celine Dion and Taylor Swift attend the 66th GRAMMY Awards at Crypto.com Arena on February 04, 2024 in Los Angeles, California. (Photo by Kevin Mazur/Getty Images for The Recording Academy)
Celine Dion made a surprise appearance at the 2024 Grammy Awards, where she presented Taylor Swift with the Album of the Year award. (Getty Images)

In her announcement of her diagnosis, Dion said she had been "dealing with problems with my health for a long time" and that the spasms caused by the condition "affect every aspect of my daily life, sometimes causing difficulties when I walk and now allowing me to use my vocal chords to sing the way I’m used to".

However, she reassured fans that she had a "great team of doctors" and a sports therapist to support her and help her build her strength up again.

SPS is a very rare condition that affects the brain and nervous system. It is characterised by muscle stiffness, rigidity and body spasms, which can be triggered by sudden noise or light due to heightened sensitivity to stimuli.

A diagnosis of the disease can be confirmed through a blood test that checks for associated antibodies, as well as an electromyography to test muscle activity and a spinal tap that identifies antibodies in the spine.

It is believed to affect only one to two in every one million people.

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