Céline Dion Opens Up About Living with Stiff Person Syndrome “I Have This Strength Within Me”

Céline Dion has revealed the harrowing impact of her struggle with stiff person syndrome, a rare and incurable condition, in her first TV interview since the diagnosis. Speaking to Hoda Kotb on NBC News, Dion disclosed that the severe muscle spasms associated with the condition have even caused her ribs to break.

“I had broken ribs at one point because sometimes when it’s very severe…” Dion shared, nodding in agreement when Kotb asked if the spasms could be strong enough to break a rib.

Dion also described the sensation of muscle spasms in her throat, comparing it to being strangled. “It’s like somebody is strangling you like someone is pushing your larynx,” she explained. During these spasms, Dion can only speak at a certain pitch. She added that spasms can also occur in the abdominal area, spine, and ribs. “It’s cramping, but it’s like in a position of, like, you cannot unlock them,” she said, describing similar cramps in her hands.

Diagnosed with stiff person syndrome in 2022, Dion has had to pause her live performances. She has previously shared that the condition affects her ability to walk and sing.

In an April interview with Vogue France, Dion spoke about her intensive physical and vocal therapy sessions, which she undergoes five times a week. She acknowledged the challenges and feelings of desperation but expressed her determination to return to her singing career.

“At the beginning, I would ask myself: why me? How did this happen? What have I done? Is this my fault?” she reflected. “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’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! … I have this strength within me. I know that nothing is going to stop me.”

A feature-length documentary about her illness, “I Am: Celine Dion,” directed by Irene Taylor, will be available on Prime Video from June 25. The full version of Dion’s NBC interview airs on June 11.