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Celine Dion Shines Light on Rare Neurological Disorder

December 21, 2022

Celine Dion recently announced on Instagram that she would pause her career because of her struggles with Stiff Person Syndrome (SPS) – an extremely rare autoimmune condition.

“It’s literally one in a million” who will be diagnosed with Stiff Person Syndrome, says Derek Smith, MD, a neurologist with Hartford HealthCare’s Ayer Neuroscience Institute, based in Norwich.

Dion shared that she had been suffering from muscle spasms before being diagnosed with the disease, which is often misdiagnosed.

“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, 54, said tearfully in an Instagram video.

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What is Stiff Person Syndrome?

Stiff Person Syndrome is an autoimmune illness based in the central nervous system, Smith says.

It is often misdiagnosed as Parkinson’s disease, multiple sclerosis, fibromyalgia, psychosomatic illness, or anxiety and phobia. It can cause a stiffening of the muscles in the torso and legs, and can also cause painful muscle spasms.

Can it be cured?

There is no cure but there is a treatment that can slow down the condition’s progression, Smith notes. It involves eliminating the white blood cells (called B cells) in the body that are producing the antibodies that cause the disorder.

Muscle relaxers are also often prescribed to reduce spasms and relieve pain.

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What are the warning signs of a neurological disease?

It can be challenging to diagnose a neurological disorder early on, whether it be something well known like multiple sclerosis or something rare like Stiff Person Syndrome.

Symptoms such as abrupt change in vision, vertigo, numbness, tingling or weakness, sudden loss of bowel or bladder control, or balance issues can indicate there is a neurological issue, Smith says.

“It can be a problem where someone goes on the Internet with their symptoms and diagnoses themselves with Stiff Person Syndrome,” he said. “A large part of what we do here is evaluate people who have symptoms and are concerned. But I would rather people call us for an evaluation than not come in.”

Often after hearing the patient’s story and conducting a physical exam it can be determined it’s an inner ear issue or something else routine. But if the problem is more complex, further testing will be ordered. A brain MRI can diagnose MS, while blood tests can diagnose Stiff Person Syndrome.