Pop star Celine Dion, who defined romance for a whole generation, with the iconic romantic track ‘My Heart Will Go On’ (from the 1997 blockbuster ‘Titanic’) on Thursday revealed that she has been diagnosed with Stiff Person Syndrome (SPS), a super-rare neurological condition. In an emotional Instagram video, the five-time Grammy-winning singer revealed she would be postponing her 2023 tour.
“I miss seeing all of you, being on the stage, performing for you. I always give 100% when I do my shows, but my condition is not allowing me to give you that right now,” she said.
“While we’re still learning about this rare condition, we now know this is what’s been causing all of the spasms that I’ve been having,” she continued. “Unfortunately, these spasms affect every aspect of my daily life, sometimes causing difficulties when I walk and not allowing me to use my vocal chords to sing the way I’m used to.”
Her revelation has grabbed many people’s attention, spurring more than 200,000 Google searches for “stiff-person syndrome” in the 24 hours since her announcement.
So here’s what you need to know about what stiff-person syndrome is, what symptoms to watch out for, and how it’s treated.
What are Stiff Person Syndrome symptoms?
According to the Cleveland Clinic, the rare disorder has to do with the nervous system, causing muscle stiffness and spasms brought on by stimuli that can include sudden movements, cold weather, loud noises, physical touch or stress. The institution also says symptoms can occur randomly.
It notes that people with SPS often first experience stiffness in the muscles of the abdomen, pelvis, chest and back. Over time, according to the clinic’s SPS fact page, that stiffness develops in other muscles, including the ones in the legs, arms and face.
These can cause falls, severe pain and significant disability,” said Dr. Emile Sami Moukheiber of the Stiff Person Syndrome Center at Johns Hopkins Medicine. “Falls from severe spasms are very common.
Eventually, the stiffness can produce an altered posture and difficulty moving.
Who is affected by stiff person syndrome?
The condition affects about one a million people, and most general neurologists will see only one or two cases in their lifetimes, Moukheiber said.
The first case of stiff person syndrome was reported in the 1950s, according to Newsome, and the disease was historically referred to as “stiff man syndrome.”
Since then, it has been found to affect twice as many women than men, and the name was changed to stiff person syndrome to avoid confusion.
Is Stiff-Person Syndrome painful?
Yes, this condition can engender brief or lasting painful muscle spasms.
According to the Cleveland Clinic, the spasms are sometimes so severe that patients risk limb dislocation, bone breaking or “uncontrolled falling. ”
The clinic notes that in severe cases, the condition can greatly inhibit the ability to walk or otherwise move.
“Some people with this disorder need ongoing treatment for years to manage symptoms and maintain quality of life,” it says.
Is Stiff Person Syndrome curable?
Yale Medicine confirms that there is no cure for Stiff Person Syndrome. Instead, the university’s school of medicine explains, people can get prescriptions for medications, such as steroids, sedatives and muscle relaxants, to lessen their symptoms. The Stiff Person Syndrome Center also uses botulinum toxin injections.
The U.S. National Institute of Neurological Disorders and Stroke (NINDS) conducts research on the condition. NINDS scientists don’t know yet what causes it exactly, but say it appears to be the result of an “autoimmune response gone awry in the brain and spinal cord.”
What are Céline Dion’s Stiff Person Syndrome symptoms?
In her video, Céline Dion says she has been dealing with health problems for a long time, including spasms that affect her daily life.
Sometimes, she said, she has difficulty walking. and she isn’t able to use her voice to sing as well as we all know she can, hence the postponement of her tour.
The singer added that she is currently followed by a “great team of doctors,” including a sports medicine therapist with whom she works every day to gain strength.
“I have hope that I’m on the road to recovery,” Dion says.
For a performer like Dion, loud noises and bright lights could act as triggers to muscle spasms.
“This is a very challenging illness that might take a toll on her if it is not treated aggressively, timely and appropriately,” Moukheiber said.
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