Celine Dion Emotionally Details Stiff Person Syndrome Struggles in New Interview

Dion detailed spasms that cause her body parts to lock in uncomfortable positions.

By Ashley Turner

Céline Dion has opened up about her battle with stiff-person syndrome. Speaking with NBC News' Hoda Kotb, the five-time Grammy winner provided an honest glimpse into her ongoing health challenges.

Dion described the syndrome's debilitating effects. "It's like somebody is strangling you. It's like somebody is pushing your larynx/pharynx," she explained, briefly mimicking the impact on her voice. "It was like talking like that, and you cannot go high or lower."

In her case, the disease manifests as unpredictable spasms throughout her body. "It gets into a spasm," Dion recounted. "It started [in the throat]. [And I thought], 'No, OK, it's gonna be fine.' But it can also be the abdominal, can be in the spine, can be in the ribs." The spasms can leave body parts locked in uncomfortable positions. "It feels like, if I point my feet, they will stay in [that position]," she said. "Or, if I cook — because I love to cook — my fingers, my hands, will get in position… It's cramping. But it's like in a position where you cannot unlock them."

Stiff-person syndrome, an incurable neurological ailment causing severe muscle spasms, led Dion to cancel all scheduled performances in 2022. "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," she added. "It's what I've done all my life. And it's what I love to do the most."

Kotb, speaking with co-host Jenna Bush on Today, reflected on Dion's ordeal. "[Céline] is now much better, but at some point she almost died, which is something that she says. It was a scary time, and she's dealing with this," Kotb shared.

Several weeks prior, Dion announced that her new documentary, I Am: Céline Dion, would eventually premiere on Prime Video and be available to stream on that platform. The announcement read that the documentary is "an intimate exploration that takes viewers on a journey inside the singer's past and present as she reveals her battle with Stiff Person Syndrome (SPS) and the lengths she has gone to continue performing for her beloved and loyal fans."

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In a press release about the documentary, the "It's All Coming Back to Me Now" singer explained her intentions for making the documentary, saying, "This last couple of years has been such a challenge for me, the journey from discovering my condition to learning how to live with and manage it, but not to let it define me." 

She continued, "As the road to resuming my performing career continues, I have realized how much I have missed it, of being able to see my fans. During this absence, I decided I wanted to document this part of my life, to try to raise awareness of this little-known condition, to help others who share this diagnosis." I Am: Céline Dion releases on June 25, 2024. Dion's full conversation with Kotb airs on Tuesday, June 11, at 10 p.m. ET on NBC.

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