Celine Dion has lost control of her muscles as the autoimmune condition she lives with, known as stiff-person syndrome, progresses, the singer’s sister said in a recent interview.
“She doesn’t have control over her muscles,” Claudette Dion told 7 Jours in an interview in French last week, reported E! News. “What breaks my heart is that she’s always been disciplined. She’s always worked hard. Our mother always told her, ‘You’re going to do it well, you’re going to do it properly.’”
The Canadian icon revealed her diagnosis publicly in late 2022 in an emotional video she posted on social media. She said the condition was the cause of the painful spasms that she’d been experiencing.
“Unfortunately, these 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,” she said. “All I know is singing, it’s all I’ve done all my life, and it’s what I love to do the most. … I always give 100% when I do my shows, but my condition is not allowing me to give you that right now.”
She postponed several European tour dates at the time before canceling her Courage world tour in May.
“I’m so sorry to disappoint all of you once again,” she said in a statement in May. “I’m working really hard to build back my strength, but touring can be very difficult even when you’re 100%.”
Her openness about her diagnosis has helped raise awareness about the extremely rare neurological condition. According to the National Organization for Rare Disorders, stiff-person syndrome “causes progressive muscle stiffness (rigidity) and repeated episodes of painful muscle spasms.” The condition develops over months or years and can begin as stiffness or discomfort in one area of the body before the pain spreads and becomes permanent. About one in a million people in the world have the condition, and it can take years before a person experiencing those symptoms is diagnosed.
Dion attended a hockey game in Canada in October and Katy Perry’s final residency show in Las Vegas early last month. Her appearances had raised hopes of her potentially resuming her tour someday — a desire she also held, her sister told 7 Jours.
“It’s true that in both our dreams and hers, the goal is to return to the stage,” Claudette Dion said. “In what capacity? I don’t know. The vocal cords are muscles, and the heart is also a muscle.”
