Speaking with Le Journal de Montréal, Claudette Dion said that another of their sisters, Linda, had moved in with Céline to help with her care.
The 55-year-old chanteuse first revealed her diagnosis of stiff-person syndrome (SPS) to the public last December, saying the disease does not allow her “to sing the way I’m used to.”
Since then, she has gone on to cancel the rest of her world tour, which was supposed to take the singer to Europe and the U.K. this fall and next spring.
“I’m so sorry to disappoint all of you once again,” Dion, 55, 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.
“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. I want you all to know, I’m not giving up… and I can’t wait to see you again!”
The move came after she postponed her return to her Las Vegas residency in 2021, citing medical issues.
Claudette has now revealed that the hit-maker is struggling to find any medications that work for her.
“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,” she told Le Journal.
“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 this extremely rare disease is still unknown, according to the Yale Medicine website, “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 according to Yale Medicine.
“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.”
Claudette told Le Journal that her sister has seen little improvement with her health, but the family is hoping for the best.
“We can’t find any medicine that works, but having hope is important,” she said.