Stiff Person Syndrome (SPS) – Celine Dion discusses her battle with rare disease

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The legendary Canadian singer Celine Dion recently revealed that she is suffering a rare neurological disease.

Celine revealed her stiff person syndrome (SPS) diagnosis in December 2022. SPS is an uncommon neurological condition that results in uncontrollably high levels of muscle tension.

Her older sister, Claudette Dion, also disclosed that in December 2023, the singer lost control of her muscles.

For yet, there is no treatment for SPS.

Speaking to Vogue France, Dion said she was

“well, but it’s a lot of work,” adding: “I’m taking it one day at a time”.

The ‘My Heart Will Go On’ hitmaker, who is the cover star for the magazine’s May edition, said she has not “beaten the disease” but would “learn to live with it”.

She also disclosed that she undergoes “athletic, physical and vocal training” five days a week to work on her muscles.

“I haven’t beat 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. So that’s me, now with Stiff Person Syndrome,” she said.

“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? Life doesn’t give you any answers. You just have to live it! 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.”