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Celine Dion has stiff-person syndrome, here’s what that means

By Natasha O’Neill, writer

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    TORONTO (CTV Network) — Early Thursday, Canadian singer Celine Dion posted a message to Instagram postponing the rest of her world tour which was set to resume in February.

Dion, 54, said she was recently diagnosed with stiff-person syndrome (SPS), also called Moersch-Woltman syndrome. It’s a rare neurological condition that gives people painful muscle spasms. There is no cure for the disease.

“I’ve always been an open book,” Dion says in the emotional video. “And I wasn’t ready to say anything before. But I’m ready now… I have been dealing with problems with my health for a long time.”

SPS is described by the U.S. National Institute of Neurological Disorders and Stroke as a disorder with “features” of an autoimmune disorder. It impacts the central nervous system and causes a person to have heightened sensitivity to noise, touch and emotional distress.

“Most commonly, it affects the muscle skeletal system where people have really a significant amount of pain, spasms that can really affect any muscle within the body,” Dr. Scott Newsome, a neurologist at the Johns Hopkins University School of Medicine told CTV News Channel on Thursday. Newsome says the disease is becoming increasingly known because there are more symptoms associated with it including eye muscle issues and gut problems.

“It likely is under-recognized,” he said.

Hunched over or stiffened posture is a characteristic of someone dealing with SPS, the U.S. National Institute of Neurological Disorders and Stroke says. Newsome says it affects twice as many women as men.

For Dion, this condition is impacting her ability to perform.

“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 said in the Instagram video.

Newsome says people usually diagnosed with SPS are in their 40s or 50s, but it can affect children and older adults as well.

Although researchers are not sure what causes SPS, Newsome says there are ways to relieve the pain and symptoms.

“My approach is looking at this from a multifaceted treatment approach,” Newsome said. “The gold standard is treating people with muscle relaxers, but given that it’s an autoimmune condition, we do use immune-related therapies to help and then other non-pharmacologic therapies (like) occupational therapy.”

As for Dion’s specific case, Newsome says having a “full team” will help her achieve some sort of normalcy again.

“Keeping the holistic treatment at the forefront for treating people with this condition, I do think people can improve their quality of life,” he said.

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