In Dec. 2022, shocking news broke that music legend Céline Dion had been diagnosed with a rare autoimmune neurological disorder known as Stiff Person Syndrome (SPS). At the time, the singer was forced to cancel and postpone some scheduled concert dates, essentially ending her performing career for the time being. Since then, Céline’s sister, Claudette Dion, has given regular interviews to keep the public updated on the singer’s condition, recently speaking with French publication Télé 2 Semaines. Read on to find out what Claudette says were her sister’s first signs of disease.
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Claudette spoke to Télé 2 Semaines in her native French, telling the publication that the initial signs of Céline’s illness were “leg cramps.” Claudette specified that the cramps were somewhat of a twist in the feet that produced muscle spasms in her legs. The symptoms first appeared in 2022.
Muscle spasms are typical signs of SPS, according to the Stiff Person Syndrome Foundation, which notes that other symptoms include “hyper-rigidity, debilitating pain, and chronic anxiety.” The foundation likens the disease to a “full-body Charley horse that stops you in your tracks.”
Muscle spasms from SPS can be so violent that they can lead to dislocated joints and broken bones, the foundation says. The disease can even cause patients to become “disabled, wheelchair-bound or bed-ridden, unable to work and care for themselves.”
In her Dec. 2022 video announcement on Instagram, Céline spoke about these issues, saying that 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.”
A year later, Claudette provided an update to the Quebec publication 7 Jours, again in French. While Céline was “working hard,” she still lacked control over her muscles, Claudette said.
“The vocal cords are muscles, and the heart is also a muscle. That’s what gets to me,” she added.
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Claudette also told Télé 2 Semaines that Céline has worked hard, potentially too hard, throughout her career.
“I think she pushed a little too hard, and her muscles are talking to her,” Claudette said. “Céline wants to give more than her body allows. It’s not the first time this has happened to her. She needs to take short breaks, learn to listen to herself, and not push her body too hard.”
Still, Claudette lauded Céline’s strength and also responded to fans’ concerns that the whole truth of the situation hasn’t been communicated to them. According to Claudette, they are not avoiding talking about her condition because it is more serious.
“We know she is well surrounded, she is intelligent, and we are not worried,” Claudette told Télé 2 Semaines. “We are not worried because if it had been extremely serious, we would know it.”
There isn’t ample research on SPS, Claudette said last year—and there’s no official therapy to make the disease go away, according to Johns Hopkins Medicine.
“Because it’s one in a million case, the scientists haven’t done that much research because it didn’t affect that many people,” Claudette said.
Treatments can “minimize the severity of symptoms,” typically via muscle relaxers or anxiety medications, per Johns Hopkins.
As a result of her diagnosis, Céline initially postponed show dates, but according to the singer’s website, her highly anticipated world tour has since been canceled. The last performance was slated for April 22 this year in London, England.
“I’m so sorry to disappoint all of you once again. I’m working really hard to build back my strength, but touring can be very difficult even when you’re 100%,” the singer said in a statement on the website. “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!”
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