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- Céline Dion spoke with Today's Hoda Kotb about the challenges of living with stiff-person syndrome.
- Before her diagnosis, Dion said she had a sinus infection or other illness when she had to cancel shows.
- But she said that the "burden" of not telling the truth about her condition was "too much."
Céline Dion opened up about the "very difficult" challenges of living with stiff-person syndrome, and said she initially tried to brush off the illness as her body being run down from touring.
Dion spoke in an extensive interview with Today's Hoda Kotb about her condition, and how she's managed it. Dion first announced that she had been diagnosed with stiff-person syndrome in December 2022.
According to NBC News, Dion first started to experience symptoms of the condition 17 years ago.
"I could say that it's like a little cold starting, or just because I pushed too much. It's the third show in a row, you're working too hard," Dion told Kotb. "But the thing is that it was different. I started to feel that the body was like, getting more rigid."
Stiff-person syndrome is a disease that makes a person's muscles involuntarily stiffen and spasm, Business Insider previously reported. It has no cure, but those with the illness can manage it through treatment. Muscle spasms can be triggered by stress or environmental triggers, and can sometimes be strong enough to make bones pop out of their joints. Dion told Kotb that she once had broken ribs as a result of the condition.
Dion said that during a stop in Germany on her 2008 and 2009 "Taking Chances" world tour, she was experiencing symptoms before the show but still went onstage to perform. The symptoms caused her voice to sound more nasal, she said, and she and her team compensated by lowering the key of her songs.
Kotb recounted a moment from Dion's upcoming documentary, "I Am: Celine Dion," in which the singer says that she was forced to tell her audiences that she had a sinus or throat infection when she canceled shows.
As Kotb recounts, Dion says in the documentary that "not telling the truth was too much to carry." Despite her illness, Dion told Kotb she didn't slow down her schedule to rest and seek treatment. But after receiving a diagnosis, she eventually went public.
"Lying for me, was… the burden was like, too much," Dion told Kotb. "Lying to the people who got me where I am today, I could not do it anymore."
In 2022, Dion began to cancel and delay shows. After going public with her diagnosis in December of that year, she canceled her full tour in May 2023. She told Vogue France in April that she was undergoing physical, vocal, and athletic therapy to "live with" the disease.
The singer told Kotb that she is determined to perform again.
"I'm gonna go back on stage, even if I have to crawl, even if I have to talk with my hands, I will," she said. "I am Céline Dion, because today my voice will be heard for the first time, not just because I have to, or because I need to, it's because I want to. And I miss it."
"I Am: Celine Dion" premieres June 25 on Prime Video.