Celine Dion makes rare statement about living with stiff-person syndrome

Celine Dion is opening up about her battle with stiff-person syndrome.

The legendary singer — who revealed her diagnosis with the “very rare neurological disorder” in December 2022 — gave rare insight into living her life with the disease in a cover story with Vogue France.

“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,” the “My Heart Will Go On” singer, 56, shared candidly with the magazine, in an interview published on Monday, April 22. “Five days a week I undergo athletic, physical and vocal therapy. 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. At the beginning I would ask myself: why me? How did this happen? What have I done? Is this my fault?”

Stiff-person syndrome, also known as Moersch-Woltman syndrome, is a “disorder of motor function characterized by involuntary stiffness of axial muscles and superimposed painful muscle spasms,” per Mayo Clinic. In Dion’s case, as she explained in her initial announcement, the 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.”

Still, she told Vogue France, “Life doesn’t give you answers. You just have to live it.”

Last year, the five-time Grammy winner was forced to cancel her Courage World Tour, which spanned dates from 2023 to 2024, due to the disease.

Dion, however, won’t give up.

“I have this illness for an unknown reason. I have two choices,” Dion said. “Either I train like an athlete and I work really hard or I disconnect and it’s over, I stay at home, I listen to my songs, I sit in front of my mirror and sing to myself. I chose to work with all my body and soul, from head to toe with a medical team. I want to be the best version of myself.”

Dion revealed she draws strength from her family — including her three sons with late husband René Angélil — fans, and others living with stiff-person syndrome.

Though she noted she can’t predict when she will perform again, “there’s one thing that will never stop, and that’s the will,” she told Vogue France. “It’s the passion. It’s the dream. It’s the determination.”