It’s been a year since singer Celine Dion first publicly shared that she had been diagnosed with stiff-person syndrome, a rare neurological disorder that prevents her from singing the way she’s used to.
Last week, Dion’s sister Claudette Dion said the Grammy winner “doesn’t have control of her muscles.”
“There are some who have lost hope because it is a disease that is not [very well] known,” she told Canada’s 7 Jours. “What pains me is that she has always been disciplined. She’s always worked hard. Our mother always told her, ‘You’re going to do it well, you’re going to do it properly.’”
The elder Dion shared that Celine has aspirations of returning to the stage, but as the singer’s condition has deterioriated, she’s unsure what that might look like.
“It’s true that, in both our dreams and hers, the goal is to return to the stage. In what capacity? I don’t know,” Claudette Dion said. “The vocal cords are muscles, and the heart is also a muscle. This is what comes to get me. Because [Dion’s condition is a] one out of a million case, the scientists haven’t done that much research because it didn’t affect that many people.”
In December 2022, the performer announced her diagnosis of stiff-person syndrome. She said in a video — shared in English and in French — that the neurological disorder “affects something like one in a million people.”
The Mayo Clinic defines stiff-person syndrome as an autoimmune disorder of the nervous system that often results in “progressive, severe muscle stiffness and spasms of the lower extremities and back.”
Since revealing her diagnosis, Dion has canceled a slew of shows. In May, she called off her Courage world tour. A release on the superstar’s website said stiff-person syndrome “prevents her from performing.”
Claudette has previously given updates on her sister’s health.
“It’s an illness we know so little about. … There are spasms — they’re impossible to control,” she said in an August interview with Hello! magazine. “You know people who often jump up in the night because of a cramp in the leg or the calf? It’s a bit like that, but in all muscles. There’s little we can do to support her, to alleviate her pain.”
The lack of treatment for the disorder has left few options for Dion and her family, with Claudette adding, “We’re crossing our fingers that researchers will find a remedy for this awful illness.”
In October, the “My Heart Will Go On” singer and her son, René-Charles Angélil, met with the Montreal Canadiens in Las Vegas as they faced the Golden Knights at the T-Mobile Arena. Dion, who has rarely made public appearances since her diagnosis, also met coach and hockey veteran Martin St. Louis.
“I remember when you were 14 years old, you sang for the pope. ‘Une colombe [‘A Dove’],’ ” St. Louis said in French of the singer’s 1984 performance at the Olympic Stadium in Greece.
“It’s been a while since then,” she responded. “We’ve changed a little since then, but not too much.”
This story originally appeared on LA Times
