What is stiff person syndrome?

It began with muscle spasms and a feeling “like someone is strangling you,” singer Celine Dion said of the disorder that has upended her life and career. “It’s been a struggle.”

In December 2022, Dion announced she was diagnosed with stiff person syndrome (SPS), an extremely rare neurological disorder that affects the brain and spinal cord. SPS can be incapacitating, drastically limiting movement, causing falls and, in some cases, leading to death.

According to the National Institute of Neurological Disorders and Stroke, stiff person syndrome is a progressive disorder characterized by slurred speech, double vision, muscle stiffness and frequent, painful muscle spasms. The muscle stiffness usually occurs along with spasms, which can be triggered by stress, sudden noises, physical contact or cold temperatures.

While experts have determined that the majority of people with SPS are females ages 30 to 60, its cause is currently unknown. Most believe SPS is an autoimmune disorder and can occur along with other autoimmune disorders, such as Type 1 diabetes.

Can SPS be treated?

There is not yet a cure for SPS. However, some symptoms of the disorder can be controlled with medication, such as muscle relaxants, sedatives and steroids. IV immunoglobulin, a natural antibody treatment, can also help reduce the stiffness, decrease sensitivities to outside stimuli and improve balance.

Additionally, physical, speech and occupational therapies can be beneficial. And because many people with SPS experience depression and anxiety due to the effects of the disorder, treatment from a mental health provider — including medication and therapy — can also help.

Talk with your doctor if you are experiencing symptoms of SPS. The disorder shares some symptoms with Parkinson’s disease, multiple sclerosis and fibromyalgia, which must be excluded to reach an accurate diagnosis and treatment plan.

As for Dion, she recently told a French journalist that she is hoping for “a miracle, a way to cure” SPS. Until then, she, like other people with SPS, will “learn to live with it,” she says.

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