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What is stiff person syndrome and how common it is?

The exact cause of the disease is unknown, but researchers suggests that it stems from an autoimmune response gone wrong in the brain and spinal cord.

YORK, Pa. — A rare neurological disorder called stiff person syndrome has been in the news recently after singer Celine Dion revealed she’s battling the rare disorder stiff person syndrome is a neurological disease that impacts the autoimmune system.

The exact cause of the disease is unknown, but researchers suggests that it stems from an autoimmune response gone wrong in the brain and spinal cord.

“The main symptoms of the illness are muscle spasms and stiffness, which can be severe and persistent, and unrelenting," said Dr. James Weiss, who is a board member The Stiff Person Syndrome Research Foundation. 

This can be triggered by environmental factors such as sudden movement, cold temperature or unexpected loud noises. Stiff person syndrome affects only about one or two in a million people.

Dr. James Weiss’s 19-year-old son Michael is one of them. He was diagnosed at the age of 12 after being in the hospital for 7 months.

“As physicians, it really couldn’t have been any more frustrating to spend our lives trying to help people with their illnesses and here in our own family, we couldn’t come up with an explanation, let alone a treatment for our sons' difficulty," said James.  

There is currently no cure for stiff person syndrome, so doctors treat the condition by focusing on relieving symptoms with medications. Michael says he is constantly in some amount of discomfort, but overall, he’s doing better than he has in the past.

“More recently, I’ve been doing pretty well, I've been on and off different medications that affect my immune system, and I’ve been on and off different medication for symptom management whether that’s pain, or muscle tightness or spams," said Michael. 

The condition can worsen as the years go by, but not for everybody who has the disease.

“The hope is that as more research is done, better treatments are found, there may be a cure that people with stiff persons will have a much better prognosis that what it was in the past," said James. 

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