Why is everyone suddenly talking about Céline Dion’s medical condition?

A recent interview between Céline Dion’s sister Claudette and a Quebec magazine has led to a resurgence of headlines about the Grammy Award-winning singer and her rare medical condition.

On Dec. 12, Claudette Dion told 7 Jours magazine that Céline had lost control of her muscles due to illness. The comment was made when reporters, who were speaking to Claudette about her own music career, asked about Céline’s condition as she deals with a rare neurological disorder called stiff person syndrome. 

The disorder most commonly causes muscle stiffness and painful spasms that come and go and can worsen over time. The spasms often begin in the legs and back but can also affect the abdomen or even the upper trunk, arms, neck and face, according to Johns Hopkins Medicine.

Claudette Dion said in the French-language interview that her sister is focused on overcoming her illness but that progress has been difficult.

“She is working hard, but she does not have control of her muscles,” the elder sister said.

“Vocal cords are muscles, and the heart is also a muscle. That is what really hits me,” she added.

Claudette didn’t elaborate on which of her sister’s muscles are currently affected. However, the interview has been cited in articles published by a host of news agencies, including the New York Daily News, CBS News and The Guardian. 

Representatives for Céline Dion did not respond to a request for comment. There has been no formal update on Dion’s condition by any medical doctors. 

What one expert says about the condition

Stiff person syndome is a chronic condition in which the severity of symptoms can fluctuate on a day-to-day basis, according to Dr. Alfonso Fasano, a clinician investigator at the Krembil Research Institute and a professor of neurology at the University of Toronto.

Fasano wouldn’t speculate on Dion’s current condition, but he talked to CBC News about the two main types of treatments for the incurable disease.

“The two groups of options are: first one, symptomatic. So we try to cover, to mask the problem, the problem being stiffness. So there are muscle relaxants,” he said.

“The other type of treatments we can use are meant to address the overactive immune system…. This can range from simple steroids to plasma exchange, which is a way to remove from the blood pathological antibodies, or even more aggressive forms of immunosuppressants,” he added. 

Public appearance at a hockey game

On Oct. 31, Céline Dion made a surprise stop at an NHL hockey game in Las Vegas to watch the Montreal Canadiens take on the Golden Knights. It was one of her first public appearances since announcing her diagnosis last December.

In a video posted by the Canadiens to several social media platforms, Dion and Habs head coach Martin St. Louis are seen hugging, shaking hands and exchanging pleasantries in French.

In an interview with CBC News last month, Claudette Dion spoke about her younger sister’s condition, calling her “strong and disciplined.”

Claudette has offered multiple updates on Céline’s condition in recent months, including an August interview with Hello! Canada where she said the spasms “are impossible to control.”

Dion was initially determined to persevere through her diagnosis, at first delaying a block of dates on her Courage world tour.

In May, she cancelled remaining dates through April 2024.

“I’m not giving up… and I can’t wait to see you again,” she said at the time.

“Unfortunately, these spasms affect every aspect of my daily life, sometimes causing difficulty when I walk and not allowing me to use my vocal cords to sing the way that I used to,” she added.

Claudette Dion, who at age 75 is 20 years older than Céline, said fans of the My Heart Will Go On singer continue to send messages of support through the Fondation Maman Dion, the charity created in their mother’s name to support children in grade school.

“People tell us they love her and they are praying for her,” she said.