Is Stiff person syndrome fatal? Celine Dion's sister shares concerning health update amid battle with debilitating disease

Celine Dion. (Photo via Getty Images)
Celine Dion. (Photo via Getty Images)

Canadian singer Celine Dion's sister, Claudette, shared an update about the star's health months after the former shared that she has been diagnosed with Stiff Person Syndrome. In the latest interview published by media outlet Le Journal de Montreal, the 55-year-old star's sister revealed that their other sister, Linda, has moved into Celine's home.

"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."

Celine Dion, who lives with her three sons - René-Charles, Eddy, and Nelson - is currently battling her rare neurological disorder, and her sister supported her decision to step away from singing.

"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."

Claudette said Celine Dion is very disciplined in every area of her life, but at the moment, they can't find a medication that works for her.

"Having hope is important."

According to the website of Hopkins Medicine, death from Stiff Person Syndrome happens rarely and does not typically occur from the disease but from other complications due to it. Some examples include wound infections or blood clots.


All you need to know about Celine Dion's rare neurological disease, Stiff Person Syndrome

According to Cleveland Clinic, Stiff Person Syndrome (SPS), an uncommon and chronic disorder, emerges as muscle stiffness and excruciating muscle spasms. The severity of symptoms can vary significantly from individual to individual.

While a cure for SPS remains unresolved there are treatment options available that can effectively assist in symptom management and potentially slow down the progress of the syndrome.

There are three types of SPS:

  • Classic SPS: The most common form, it is linked to GAD (glutamic acid decarboxylase) antibodies, but other antibodies have also been linked to it in studies.
  • SPS variants: There are a number of subtypes of SPS, which can affect specific areas of the body or cause more severe incoordination.
  • Progressive encephalomyelitis with rigidity and myoclonus (PERM): A more severe form of SPS known as PERM causes reduced consciousness, problems with eye movement, ataxia, and autonomic dysfunction. Due to autonomic dysfunction, PERM often needs care in a medical setting.

As of this writing, the severity of Celine Dion's disease is not known or revealed to the public.

Dion first revealed her diagnosis of the rare disease in December 2022 via an Instagram video. Wearing an all-black outfit, she said:

"Hello everyone, I’m sorry it’s taken me so long to reach out to you, I miss you so much and I can’t wait to be on stage talking to you in person. As you know, I’ve always been an open book and I wasn’t ready to say anything before but I’m ready now."

The All by Myself singer said that the disorder has started impacting her daily life and how she performs on stage.

"While we’re still learning about this rare condition, we now know this is what’s been causing all of the spasms that I've been having. Unfortunately these 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."

As of now, it is not known when or if Celine Dion will return to the stage.

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Edited by Nikita Nikhil
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