Celine Dion Opens Up About Her Incurable Stiff-Person Syndrome In Rare Interview Teased By ‘Today’
A frail Céline Dion has granted her first televised interview since being diagnosed with stiff-person syndrome in 2022.
The five-time Grammy winner talked about her condition to NBC News’ Hoda Kotb. A first-look of their talk ran on the Today show this morning.
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“It’s like somebody is strangling you. It’s like somebody is pushing your larynx/pharynx,” she said of the disease, briefly altering her voice to demonstrate the effect. “It was like talking like that, and you cannot go high or lower.”
“It gets into a spasm,” Dion continued. “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 condition sometimes feels like it locks on to a certain body area.
“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 is an incurable neurological disease that can cause debilitating muscle spasms.
Its advent caused Dion to cancel all upcoming performances.
“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 at the time.
“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 spoke to co-host Jenna Bush on Today about the interview, which took place last month.
“[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 said.
Dion’s conversation with Kotb airs in full on Tuesday, June 11, at 10 p.m. ET on NBC.
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