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A Look Into the Rare Disease Affecting Singer Celine Dion

Monday, December 12, 2022 1:36 PM

In an emotional Instagram video, singer Celine Dion last week announced that she was diagnosed with a rare neurological condition known as 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, 54, told fans in the video.

What is stiff-person syndrome? Carolyn Goldschmidt, DO, a neuroimmunologist with the NorthShore Neurological Institute, answered questions about the rare disorder:

How much is known about the disorder?

“It is a very rare autoimmune neurological disorder that affects 1 to 2 people per million in the population so it’s quite rare. Despite this, we have a pretty good understanding of what causes the disorder, how to diagnose it and how to treat it.”

stiff-person syndromeWhat is the cause?

“It is an autoimmune disease caused by an antibody known as glutamic acid decarboxylase or GAD65, so it’s an anti-GAD antibody that causes the disease. It does this by blocking the enzyme that leads to a loss of inhibitory muscle activity, which leads to an increase in muscle tone and muscle stiffness that can be very debilitating.”

Can someone recover from it?

“The prognosis varies from patient to patient. Some patients can have more mild symptoms that can be managed with relatively low doses of muscle relaxers. Other patients develop more severe symptoms and can eventually become bed bound. There are other treatment options for more severe cases if it gets to that point but sometimes it can be hard to predict what the prognosis will be, especially in the beginning of the course of the disease.”

What does it feel like?

“It’s a lot of rigidity, increased muscle tone, stiffness, making it hard to move, hard to walk and you can have painful muscle spasms as well. Those symptoms are treated with muscle relaxer medications.”

 

To learn more about the NorthShore Neurological Institute or to make an appointment,, call us at 877.570.7020 or click here.