Céline Dion Opens Up About Living With Rare Disease
In late 2022, beloved powerhouse vocalist Céline Dion revealed that she was diagnosed with stiff-person syndrome. Dion has canceled any performances and largely retreated from the spotlight since then, but she gave the world renewed hope for her health earlier this year when she appeared at the 2024 Grammy Awards to present the coveted Album of the Year honor.
In a rare new interview with Vogue France, the acclaimed singer opened up about life since her diagnosis, which includes some new parts of her routine as a way to manage the symptoms.
"I haven’t beat the disease, as it's still within me and always will be," she said. "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. 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."
Needless to say it was a tough adjustment at first, not just physically, but mentally as well.
"At the beginning I would ask myself: why me? How did this happen? What have I done? Is this my fault?" she admitted. "Life doesn't give you any answers. You just have to live it! 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," she concluded. She even has a milestone that she wants to reach in her journey: "My goal is to see the Eiffel Tower again!"
Stiff-person syndrome is a rare neurological disorder that afflicts approximately one in every one million people. As of now, there is no cure or evidence-based treatment for the disease, and sufferers often rely on medications for help.
Dion's timeline for a return to the stage remains unknown even to her as she continues to listen to her body. Regardless, it seems like a new day has already come.