A tearful Celine Dion revealed her frightening and incurable neurological condition to fans in a video message, explaining that she will have to postpone tour dates as a result.
The five-minute-long video was a heart-wrenching display of transparency and humanity from Dion, who has never shied away from sharing her life with her fans. Her love for singing and performing for an adoring audience is clear as she fought back tears to deliver her message.
Celine Dion reveals that she’s been diagnosed with a rare neurological disorder called Stiff Person Syndrome in an emotional video to fans.
She says the symptoms of this disorder are what have been causing her to have severe muscle spasms in the past. pic.twitter.com/amnEmxOggf
— Pop Crave (@PopCrave) December 8, 2022
“I’m sorry it’s taken me so long to reach out to you. I miss you all so much and I can’t wait to be on stage talking to you in person,” the video begins. “As you know, I’ve always been an open book. And I wasn’t ready to say anything before, but I’m ready now.”
“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 for me to talk about everything that I’ve been going through,” she said. “Recently I’ve been diagnosed with a very rare neurological disorder called ‘Stiff Person Syndrome’ which affects something like one in a million people.”
The 54-year-old went on to explain how the issue has impacted her daily life and even her ability to sing.
“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,” Dion explained. “It hurts me to tell you today, this means I won’t be ready to restart my tour in Europe in February.”
This announcement was shocking, as many people had never even heard of “Stiff Person Syndrome” before. The National Institute of Neurological Disorders and Stroke defines it as “a rare neurological disorder with features of an autoimmune disease. SPS is characterized by fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to stimuli such as noise, touch, and emotional distress, which can set off muscle spasms.”
“Abnormal postures, often hunched over and stiffened, are characteristic of the disorder,” the explanation continues. “People with SPS can be too disabled to walk or move, or they are afraid to leave the house because street noises, such as the sound of a horn, can trigger spasms and falls. SPS affects twice as many women as men.”
There is currently no explanation for what causes SPS, “but research indicates that it is the result of an autoimmune response gone awry in the brain and spinal cord.”
However, just because there is not yet a definitive cure doesn’t mean that there is no treatment.
“People with SPS respond to high doses of diazepam and several anti-convulsants, gabapentin and tiagabine. A recent study funded by the NINDS demonstrated the effectiveness of intravenous immunoglobulin (IVIg) treatment in reducing stiffness and lowering sensitivity to noise, touch, and stress in people with SPS,” the institute website reads.
SPS has been described as the “human statue disease” with spasms sometimes becoming so powerful that they can break bones and cause other severe injuries. Falls are common among those who are diagnosed with SPS, exacerbated by the inability to catch themselves on the way down.
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