Céline Dion‘s sister has shared a heartbreaking update about the singer’s illness, saying the legendary chanteuse “doesn’t have control over her muscles” due to symptoms of stiff person syndrome (SPS).
In a French-language interview, Claudette Dion told 7 Jours that her sister can no longer control certain body movements, but that the ultimate goal is “to return to the stage.”
“In what capacity? I don’t know,” she added.
It’s been a year since the pop superstar announced her diagnosis with the rare autoimmune disorder of the nervous system.
Her world tour was supposed to take the 55-year-old to Europe and the U.K. this fall and next spring, but she announced in May that she would cancel the tour.
“I’m so sorry to disappoint all of you once again,” she said in a May 26 statement. “I’m working really hard to build back my strength, but touring can be very difficult even when you’re 100 per cent.
“There are some who have lost hope because it is a disease that is not (very well) known,” Claudette told 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.’”
In August, Claudette said that another of their sisters, Linda, had moved in with Dion to help with her care.
“When I call her and she’s busy, I speak to my sister Linda who lives with her and tells me that she’s working hard. She’s listening to the top researchers in the field of this rare disease as much as possible,” Claudette told Le Journal at the time.
“I honestly think that she mostly needs to rest. She always goes above and beyond, she always tries to be the best and top of her game. At one point, your heart and your body are trying to tell you something. It’s important to listen to it.”
The cause of SPS, an extremely rare disease, is still unknown, according to Yale Medicine, “but researchers suspect that it may be the result of an autoimmune reaction where the body attacks nerve cells in the central nervous system that control muscle movement.”
The name doesn’t do justice to the pain and life-changing symptoms the syndrome causes, Tara Zier, founder of the Stiff Person Syndrome Research Foundation, told The Canadian Press earlier this year.
“A lot of people have challenges with mobility. Many have assisted devices for mobility, walkers, wheelchairs. Some people are bedridden,” she said.
The Stiff Person Syndrome Research Foundation says “the most common symptoms of SPS are muscle rigidity, stiffness and spasms in the muscles of the trunk including the back and limbs.”
These can be triggered by environmental stimuli, like loud noises or emotional stress.
“The muscle spasms can be so severe they cause the person to fall down. The muscles gradually relax after the stimulus is gone,” the Yale Medicine website states.
While there is no cure for SPS, when doctors treat patients with this condition, Yale Medicine says they focus on managing the symptoms with medications “such as sedatives, muscle relaxants, and steroids.”
In early November, Dion made a surprise appearance with her sons when the Montreal Canadiens took on the Golden Knights in Las Vegas.
The icon shared a few photos online, marking her first public outing since her diagnosis.
In the snaps, Dion posed her children — René-Charles and twins Nelson and Eddy — in the locker room with Habs players and coach Martin St. Louis. The legendary singer and her boys had “such a fun time” visiting the team.
— With files from Global News’ Kalina Laframboise and Sarah Do Couto