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Grammy Award–winning singer Céline Dion revealed on Dec. 8 that she was recently diagnosed with a rare neurological disorder known as stiff-person syndrome. In an emotional video posted on Instagram, the 54-year-old pop star explained that she’s been battling health issues for a while now, including severe and persistent muscle spasms that interfere 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.
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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.