Céline Dion suffers from Stiff-Person Syndrome. She shared how much the illness limits her life with a US broadcaster.
Céline Dion, 56, has shared moving words about her battle with Stiff-Person Syndrome. In 2022, the singer was diagnosed with the rare autoimmune disease and made it public after she had to cancel her “Courage” world tour. After that, she initially withdrew from the public eye. Now she has spoken about her life with the illness to a US broadcaster. The media service “ET Online” published the first excerpts.
What troubles her the most is that the disease, which leads to motor function disorders in the form of muscle stiffness and spasms, affects her vocal cords (“her instrument,” as the artist says): “It’s like someone is choking you! It’s like someone is pressing on the larynx in this way,” Dion tells journalist Hoda Kotb, 59, in an exclusive interview for “NBC Nightly News,” which will be broadcast on June 11. She places both hands around her neck, mimicking strangulation.
There is no cure
In December, her sister Claudette Dion, 75, alarmed with a health update: “She is working hard, but she has no control over her muscles.” Céline Dion has consulted “the best researchers in the field,” but they “can’t find any medications that work.”
Now, the “My Heart Will Go On” singer reports herself that she is a passionate cook. But the chronic syndrome causes her fingers and hands to suddenly cramp “in one position” and she cannot release them, making cooking impossible. Stiff-Person Syndrome can also occur in other parts of the body, such as the abdomen, spine, or ribs. “I once had broken ribs because sometimes, when the spasms are very severe, it can lead to bone fractures,” Dion said.
Comeback planned
The Canadian singer’s greatest wish is to be able to perform again. In March 2024, the five-time Grammy winner announced determinedly on her Instagram account, “to one day stand on stage again and lead as normal a life as possible.” The musician’s health issues will be revealed in the documentary “I Am: Céline Dion,” which is set to be available on Amazon Prime Video starting June 25. “It’s not hard to do a show. It’s hard to cancel one,” the 56-year-old sighs in the trailer for the streaming format. “If I can’t walk, I’ll crawl. But I won’t stop!”
