In an emotional preview of her upcoming interview with Hoda Kotb, legendary singer Celine Dion shared heartfelt details about her struggle with stiff person syndrome, a condition she publicly disclosed in 2022. The 56-year-old, five-time Grammy winner described the crippling effect on her singing ability. Dion's candid interview marked her first televised discussion of her health challenges since her diagnosis.
“It is like somebody strangling you. It is like someone is pushing your larynx,” Dion told Kotb in Friday's preview. “You cannot get high or lower. It goes into a spasm.”
“But it can also be in the abdominal, can be in the spine, can be in the ribs. It feels like if I point my feet, they will stay,” she explained. “It is cramping, but it is in a position where you cannot unlock them.” Kotb even revealed that Dion had a broken rib as a result of one of the spasms.
“She thought she was crazy; she went to so many doctors,” Kotb told her co-hosts at TODAY. “Then they found the diagnosis. There is actually something in her bloodstream. She's fighting through it, trying to figure out if she can come back.”
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In 2022, Dion revealed that she had been diagnosed with stiff-person syndrome, a rare and complex neurological disorder characterized by severe muscle stiffness and spasms. Stiff-person syndrome can significantly impact mobility and may be associated with other autoimmune diseases. Symptoms typically progress gradually and can lead to difficulty walking and a heightened sensitivity to noise, touch, and emotional distress.
The exact cause of the disorder is unknown, but it involves an abnormal autoimmune response that may be linked to the nervous system. Treatment often includes medications to manage symptoms, such as muscle relaxants and drugs that suppress the immune system.
“I’m well, but it’s a lot of work. I’m taking it one day at a time,” Dion told Vogue France last month. “I haven’t beat the disease, as it's still within me and always will be. I hope that we'll find a miracle, a way to cure it with scientific research, but for now I have to learn to live with it. So that's me, now with Stiff Person Syndrome. Five days a week I undergo athletic, physical and vocal therapy.”
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“I work on my toes, my knees, my calves, my fingers, my singing, my voice… I have to learn to live with it now and stop questioning myself.,” Dion said, “At the beginning, I would ask myself: why me? How did this happen? What have I done? Is this my fault?”
“Life doesn't give you any answers. You just have to live it!” she said. “I have this illness for some unknown reason. The way I see it, I have two choices. Either I train like an athlete and work super hard, or I switch off and it’s over, I stay at home, listen to my songs, stand in front of my mirror and sing to myself. I've chosen to work with all my body and soul, from head to toe, with a medical team. I want to be the best I can be. My goal is to see the Eiffel Tower again!”
“Above all, the love of my family and my children, the love of the fans too, and the support of my team,” Dion explained. “People who suffer from SPS may not be lucky enough or have the means to have good doctors and good treatments. I have those means, and this is a gift. What's more, I have this strength within me.”
“I know that nothing is going to stop me.”
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