Celine Dion is giving fans a closer look at life with Stiff-Person Syndrome. In a preview clip for an interview with Today that will air on Tuesday, Dion said that singing with Stiff-Person Syndrome feels “like somebody is strangling you.”
Dion will share more details about what living with the rare incurable disease is like in her much anticipated documentary, I Am: Celine Dion, out June 25 on Prime Video. She first revealed to the world that she was diagnosed with Stiff-Person Syndrome with an Instagram post in December 2022, after which she canceled her world tour and retreated from public life for further treatment. The disease is known to cause muscle stiffness and painful spasms that worsen over time.
In the Today clip, Dion pushes her larynx back with her fingers to demonstrate how spasms with the disease and what her voice sounds like under the pressure. “It is like you are talking like that, and you cannot go high or lower. It gets into a spasm,” she continued.
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She also revealed that the spasms the syndrome causes can have some serious consequences. “I had broken ribs at one point, because sometimes it’s very severe,” she said. The neurological condition has also made other things Dion enjoys very difficult. “I love to cook,” she said, but when she does, “My fingers, my hands, will get in a position,” where “you cannot unlock them.”
Though she’s spent time out of the spotlight following her diagnosis’ reveal, Dion made a surprise appearance earlier this year at the Grammys.
In the doc's trailer, Dion says, “I have to admit it’s been a struggle,” to halt her singing career as the disease takes its toll. “I miss it so much. The people, I miss them. If I can’t walk, I’ll crawl. And I won’t stop. I won’t stop.”
The full Today interview will air June 11 on NBC.
