Stiff Person Syndrome

Imagine a full body Charley horse that stops you in your tracks - Stiff Person Syndrome Research Foundation

Stiff Person Syndrome
Stiff Person Syndrome

image by: Yanito Freminoshi

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What It’s Like to Live With Stiff Person Syndrome

“Something in the software goes wrong, and the inhibitory system starts to malfunction,” says Dr. Avi Almozlino, chief of neurology at Newton-Wellesley Hospital, part of Mass General Brigham. “The inhibitory signals become weaker and weaker, and the excitatory signals start to take over, contracting the muscles uncontrollably.” People with the condition often experience muscle spasms in the trunk, arms, or legs and become more sensitive to noise and touch. Emotional triggers, including stress, can worsen the muscle spasms. Those episodes can make it difficult to walk or move to perform basic daily tasks.

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 What It’s Like to Live With Stiff Person Syndrome

Only about one in a million people gets stiff person syndrome, and the disease affects twice as many women as men. Many people, like Dion, spend months or years trying to find the reason for their spasms, since the symptoms can mimic some other autoimmune disorders. One of the those patients is Maureen Materna, a 74-year old from Cleveland, Ohio who has been living with the condition since 2011. Like Dion’s diagnosis, it took doctors a while to reach hers.

The Stiff Person Syndrome Research Foundation

Our vision is that all people with Stiff Person Syndrome receive a prompt diagnosis, compassionate care, effective treatments, and a cure.


The National Institute of Neurological Disorders and Stroke (NINDS) supports research related to SPS. A study using the drug rituximab proved ineffective in treating individuals with the disorder. Current research is focused on understanding the cause of the disease and the role of the anti-GAD antibodies.


Stiff-person syndrome (SPS) is a rare acquired neurological disorder characterized by progressive muscle stiffness (rigidity) and repeated episodes of painful muscle spasms.

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