Director of the University of Colorado’s Autoimmune Neurology program, Dr. Amanda Piquet, diagnosed Céline Dion with Rigid Person Syndrome. Piquet discussed Dion’s condition at length.
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“You can think of it as putting the brakes on the nervous system,” Piquet explained of the condition to People. “So if you can’t brake, you’ll have symptoms of hyperexcitation, muscle spasms.”
You are watching: Awareness of Céline Dion’s disease could lead to discovery of a cure for stiff person syndrome: Expert
As for Dion, she has since started experiencing symptoms in her throat and feet, making it difficult for her to breathe and walk. She also suffered from loss of vision and periods of “crisis” when her body became stiff and suffered severe pain.
She elaborates: “Most people at some point in their lives have experienced a charley horse in their calves. So imagine not just that muscle but all the muscles in the body being involved, which That can be extremely uncomfortable and extremely painful.” “It can last a few minutes to hours.”
Piquet also explained why Dion was diagnosed 17 years after she began experiencing symptoms.
“This is a difficult disease to diagnose because it is not clearly recognized by the health system,” Piquet revealed. The common age of diagnosis is around 50”, which explains why it is called a “progressive disease”.
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According to Piquet, Stiff Man Syndrome is a “rare” disease because it can look very similar to other conditions.
“So at first, when the muscle spasms start, they tend to come and go and it can resemble many other neurological diseases,” she said, adding that it can also be misdiagnosed is Parkinson’s disease.
Sadly, there is no cure for Rigid Person Syndrome and all patients can do is get treatment to alleviate the symptoms that occur.
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“We have no FDA-approved treatments for this disease,” Piquet confirmed. While we use these treatments, everything is off-label.” “I’m sure there have been patients who have had clear improvements with these therapies, but we need clinical trials and studies to tell us what is really best.”
However, because Dion has spoken publicly about her illness, Piquet hopes that interest in funding will increase because two out of every 100,000 people are battling Rigid Person Syndrome.
“Between the awareness we see of Céline bringing this to the general population and our epidemiological research, people will be interested in finding a cure and better treatments for this disease.” “We need to do better and I think the research is being done. The future of SPS is bright and there’s a lot ahead. And although we don’t have a cure for this disease yet, there certainly is things we can do to help control the disease.”
READ MORE: Céline Dion ‘Almost Died’ In Battle With Rigid Person Syndrome, Says Hoda Kotb
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