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What Is Stiff-Person Syndrome?

The rare disorder affects the muscles, making movement more difficult

spinner image close up of Celine Dion at the World Premiere of Disney's Beauty and the Beast before her stiff person syndrome diagnosis
Bravo Media, LLC / Getty Images

It’s been about one year since famed singer Céline Dion revealed that she was diagnosed with a rare neurological disorder known as stiff-person syndrome. And now, her sister is giving an update on her health.

In a recent interview with the French publication 7 Jours, Claudette Dion said the Grammy-award winning artist no longer has control of her muscles. “What pains me is that she has always been disciplined. She always worked hard,” Claudette said in the interview. 

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Last December, Dion opened up about her diagnosis in an emotional video posted on Instagram, where the singer explained that she’d been battling health issues for a while, including severe and persistent muscle spasms that interfered with her performing.

“Unfortunately, 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 video.

Muscle spasms are a common symptom of stiff-person syndrome, which also has features of an autoimmune disease and is estimated to affect fewer than 5,000 people in the U.S., according to the National Institutes of Health (NIH).

“The body, for some reason, starts to fight itself in an autoimmune type of way, where it will attack the nerves in the muscles, causing [them] to be more sensitive and overactive and stiff,” explains Desimir Mijatovic, M.D., a pain specialist with the Cleveland Clinic.

The trunk and the abdominal muscles are typically the first to stiffen, according to the Cleveland Clinic. The muscles in the limbs, even the face, can also be affected. Depending on the areas of the body that are impacted, “it can become difficult to move around,” Mijatovic says, “so this can cause a lot of problems for people in their daily lives.”

Stimuli like noise, stress and touch can trigger the stiff muscles to spasm. (These spasms can occur for no reason, too.) Some people experience spasms so severe that the force generated can fracture a bone or cause them to fall, the NIH says.

Who is at risk?

Stiff-person syndrome is extremely rare, affecting about 1 in a million people, according to the Cleveland Clinic. Symptoms — which can range from mild to severe — can develop at any age, but the condition is most commonly seen in adults between the ages of 30 and 60.

Twice as many women as men are affected by stiff-person syndrome. The disorder is also more likely to occur in people with other types of autoimmune diseases, including diabetes, thyroiditis, vitiligo (loss of skin color) and pernicious anemia, and certain cancers, including breast, lung, kidney, thyroid, colon, and Hodgkin’s lymphoma. Scientists don’t know what, exactly, causes stiff-person syndrome, and there’s no known way to prevent it.


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How is stiff-person syndrome diagnosed?

When it comes to early warning signs, Mijatovic says people typically notice that “their muscles aren’t working like they used to.” They may have trouble walking or may fall more often.

There are other conditions that cause similar problems, Mijatovic says, “so if you are having any issues or concerns or questions, it’s very important to talk to your doctor about them to make sure that nothing’s being missed and that you’re being taken care of appropriately.”

Blood tests, a spinal fluid analysis and a test that measures electrical activity in your muscles can help confirm a diagnosis of stiff-person syndrome.

Is stiff-person syndrome curable?

There is no cure for the disorder, but many patients can find some symptom relief with medications that can relax the muscles and the nerves. Certain devices, such as walkers and canes, can help with mobility, Mijatovic says. Physical therapy, occupational therapy and aqua therapy can also help patients manage the syndrome, according to Yale Medicine.

Editor's note: This story, first published Dec. 9, 2022, has been updated to reflect new information.