Celine Dion has tragically lost control of her muscles, her sister Claudette told a Canadian website, a year after the pop star announced she is suffering from stiff person syndrome.
Dion’s incurable condition is rare and causes severe and persistent muscle spasms that can strike without notice.
“She’s working hard, but she doesn’t have control over her muscles. What breaks my heart is that she’s always been disciplined,” Claudette told the French-language site 7 Jours. “She’s always worked hard. Our mother always told her, ‘You’re going to do it well, you’re going to do it properly.’”
Claudette added that Dion’s goal is still to return to the stage to perform live in front of her fans, but acknowledged that no one in her family yet knows if and when that will ever happen.
“It’s true that in both our dreams and hers, the goal is to return to the stage,” she said. “In what capacity? I don’t know.”
Symptoms of the affliction mimic the characteristics of other ailments such as Parkinson’s Disease or multiple sclerosis. The muscle spasms associated with SPS sometimes appear out of the blue and can be triggered by loud noise or emotional distress, according to the Cleveland Clinic.
The muscle spasms can be severe enough to affect mobility and cause a patient to fall. As it progresses, the disease makes if more difficult to walk and falls can become more frequent.
“The vocal cords are muscles, and the heart is also a muscle,” Claudette continued in her interview with 7 Jours. “Because it’s one out of a million … the scientists haven’t done that much research because it didn’t affect that many people.”
But Claudette went on to add that the five-time Grammy winner hasn’t lost hope.
“There are some who have lost hope because it is an illness that is not known, but if you only knew how many calls we receive … People tell us they love her and pray for her. She receives so many messages, gifts, blessed crucifixes.”
Dion has kept a low profile since announcing she is battling stiff person syndrome in an emotional Instagram video last December. Her appearance last month at a hockey game between the Las Vegas Golden Knights and the Montreal Canadiens marked one of the first times she had been seen in public since her last onstage performance in March 2020.
In October, Claudette, offered a hopeful update on the singer’s condition.
“I know that morally, mentally, she is strong. She is not depressed at all … she really has the joy of living. We will get through this,” she told the French-language site showbizz.net.
Claudette said that Celine is recuperating with help from their other sister Linda in Las Vegas and is following her doctors’ care plan closely because she “wants to come back, that’s for sure.”
Her sibling said that the music icon is being heartened by the “beautiful messages of love” she has received since she revealed her devastating diagnosis last year.
“I’m keeping my fingers crossed,” Claudette added.
But Celine’s sister also hit out at some of the lies that have surfaced regarding the French-Canadian artist’s condition.
“Why are they going there? Why do they say she is in a wheelchair? Why do they say she had cancer? Why are you inventing?” she asked.
Earlier this summer, Claudette said Celine was working closely with doctors who specialize in stiff person syndrome.
“When I call and she is busy, I speak to my sister Linda, who lives with her and who tells me that she works hard,” Claudette told the Journal de Montreal.
In May, the My Heart Will Go On hitmaker announced she was cancelling her world tour. “I’m so sorry to disappoint all of you once again,” Dion wrote in an Instagram message. “I’m working really hard to build back my strength, but touring can be very difficult even when you’re 100%. It’s not fair to you to keep postponing the shows, and even though it breaks my heart, it’s best that we cancel everything now until I’m really ready to be back on stage again.”
“We can’t find any medicine that works,” Claudette told the Journal de Montreal, “but having hope is important.”
When she shared her tragic news last year, Dion said “it’s been a struggle.”
“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,” Dion told fans. “I have to admit it’s been a struggle. All I know is singing, it’s what I’ve done all my life.”
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