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How Common Is Stiff Person Syndrome?

A Woman Stairs Out Her Kitchen Window, Deep in Thought.

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On December 8, 2022, Celine Dion posted an emotional video on her Instagram account about the postponement of her upcoming European tour dates due to a diagnosis of Stiff Person Syndrome.

“I’ve been dealing with problems with my health for a long time, and it’s been really difficult for me to face these challenges and to talk about everything that I’ve been going through,” Dion says in her video. “I always give one hundred percent when I do my shows, but my condition is not allowing me to do that right now.”

Later in the video, Dion states that the muscle 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.”

What is Stiff Person Syndrome?

Stiff Person Syndrome (SPS) is a rare disorder that affects about one or two in one million people. It is an autoimmune and neurological disorder that affects the central nervous system (brain and spinal cord) and causes rigidity and spasms in the torso and limbs, debilitating pain and chronic anxiety. People with this condition first experience a stiffening of the muscles of their torso, followed by, over time, the development of stiffness and rigidity in the legs and other muscles.

The spasms can happen at any time and are often due to environmental factors, like loud noises, emotional distress or even a light touch. It can last anywhere from a few seconds to several hours. Some people have spasms so violently they may fall down or injure their bones and joints.

Who Might be Diagnosed with Stiff Person Syndrome?

The exact cause of Stiff Person Syndrome is unknown. But it is more likely to appear in people with certain autoimmune disorders, including diabetes, thyroiditis, vitiligo and pernicious anemia, or certain cancers like breast, lung, kidney, thyroid, colon and Hodgkin’s lymphoma. Twice as many women have developed SPS. The symptoms can begin anytime but usually develop between ages thirty and sixty.

What’s the Treatment for Stiff Person Syndrome?

There is no cure for Stiff Person Syndrome, and treatment focuses on relieving symptoms with medications such as sedatives, muscle relaxants and steroids. Depending on the individual, immunotherapy, physical and occupational therapy may also be part of a treatment plan.

"SPS can be challenging to diagnose and treat. SPS is very rare and may mimic other neurological conditions which is why seeing a specialist who is familiar with SPS is imperative." - Dr. Nivedita Jerath

Specialized Neurological Care for Every Age

Although Stiff Person Syndrome is very rare, if you or a loved one find yourself in need of care for any neurologic condition, know that expert help is here. Learn more about our specialized neurology services and find a doctor near you who can support your whole health, inside and out.

Support Group Information:

Meets virtually via zoom the first Wednesday of every month from 2-3pm eastern. Facilitated by clinical social workers. Sign up by emailing us at: [email protected]

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