Explained: Celine Dion’s rare Stiff Person Syndrome and how it’s changed her life

Celine Dion presenting Album of the Year at the Grammys was a real highlight for some because she has been battling a rare neurological disorder known as Stiff Person Syndrome.

Celine first revealed that she was having “severe and persistent muscle spasms” in a January 2022 statement about why she had to postpone her shows across the United States and Canada. This news devasted fans as she is one of the most beloved musical acts going.

In December of that year, she went public about getting a formal diagnosis of Stiff Person Syndrome via an Instagram video.

“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. Unfortunately, these spasms affect every aspect of my daily life, sometimes causing difficulties when I walk and not allowing me to use my vocal cords to sing the way I’m used to,” Celine told her millions of fans.

In May last year, it was believed that Celine “will likely never tour again” when she announced the cancellation of her Courage World Tour. A source speaking to CNN said that “she is in a lot of pain”, along with detailing that she is in regular physical therapy.

Last month, Celine announced she was working on a documentary all about her “journey” coming to grips with her health condition and the overwhelming mark it has left on her life.

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“This last couple of years has been such a challenge for me, the journey from discovering my condition to learning how to live with and manage it, but not to let it define me,” she said in a statement. “As the road to resuming my performing career continues, I have realised how much I have missed it, of being able to see my fans. During this absence, I decided I wanted to document this part of my life to help others who share this diagnosis.”

Celine added that she wanted the movie to “raise awareness of this little-known condition” with her celebrity, which has stretched over decades. Her career highlights include the Titanic theme song My Heart Will Go On, winning Eurovision for Switzerland in 1988 and snagging five Grammys. Don’t forget, Celine was also once the Queen of the Las Vegas residency, way before Adele and Kylie Minogue. However, it still leaves the question: What exactly is the rare neurological condition Stiff Person syndrome, and how does it affect Celine Dion?

What is it?

According to the leading medical research centre Johns Hopkins, Stiff Person Syndrome is a rare autoimmune and neurological condition, believed to appear at a rate of two in every million people. The main symptoms are muscles in the arms and torso going from rigid to spasming. Other symptoms include chronic pain, trouble walking, double vision and slurred speech. The way it manifests differs on what kind a person has. However, eventually, it robs those affected of their mobility.

The National Institute of Neurological Disorders and Stroke dubbed it a “rare, progressive syndrome that affects the nervous system, specifically the brain and spinal cord”.

Who does it affect?

It is most commonly diagnosed in people aged between 40 and 50. However, according to the experts at Johns Hopkins, it can be found in kids and older adults.

What causes it?

No one knows! Scientists, like the ones at Johns Hopkins and others, are currently trying to pinpoint exactly why it rears itself. There is speculation it is caused by an autoimmune response where the body starts attacking healthy body tissue. Roughly 80 per cent of those with it have a chemical in their body known as GABA. Doctors believe this chemical is supposed to slow down brain activity and regulate motor neurons. Based on this, some scientists think that less GABA in the brain and more in the body leads to muscles becoming more likely to spasm and freeze.

How is it diagnosed?

As it is so rare, the condition is often wrongly diagnosed as Parkinson’s disease by medical professionals. This is because the two neurological conditions have many overlapping symptoms. Stiff Person Syndrome also shares many symptoms with multiple sclerosis, fibromyalgia, anxiety and many phobias. However, it is mainly discovered via blood tests. However, this has its issues, as some don’t always come up as positive. Doctors can also refer people for MRI and CT scans if they don’t work.

What is the treatment?

According to Johns Hopkins, there is no cure. The only thing you can do to alleviate the suffering it brings is to work with a specialist to ease symptoms.

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