Find out more about Stiff Person Syndrome
CELINE Dion has opened up about her Stiff Person Syndrome diagnosis and how it affects her daily life.
The singer admitted that it “feels like her body is leaving her” in a clip of an upcoming interview with Today’s Hoda Kotb.
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In an interview with Today’s Hoda Kotb, Celine Dion admitted that she felt like her body was leaving her while battling Stiff Person SyndromeCredit: NBC
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The full interview with Celine and Hoda will air on Tuesday, June 11, on NBC at 10 pm EasternCredit: NBC
Celine, 56, said that she had to try and raise her kids, be a hero, and hide from the public, while she felt her body leave her.
She had to take care of all of that while dealing with her illness because her husband, René Angélil, was battling cancer at the time.
René died in 2016.
She shares twin sons – Eddy and Nelson, 13 – as well as her older son, René-Charles, 23, with her husband.
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The singer also admitted that not telling the truth about her illness was “too much to carry.”
“I couldn’t do it anymore,” Celine said.
She told Hoda that she couldn’t say anything right away because she didn’t know what she had.
“We did not know what was going on. I did not take the time,” Celine said.
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“I should’ve stopped. Take the time to figure it out.”
“Lying for me, the burden was too much,” she said.
“Lying to the people who got me where I am today. I could not do it anymore.”
The full primetime special with Celine and Hoda, 59, will air on Tuesday, June 11, at 10 pm Eastern.
CELINE’S PAIN
Last week, a different clip of Celine’s interview also aired on Today.
In this snippet, she shared that it feels like “someone is strangling her” when she sings.
What is Stiff Person Syndrome?
Celine Dion stepped out of the spotlight after she was diagnosed with a rare autoimmune condition
Stiff-Person Syndrome is a rare neurological disorder that progresses overtime.
The condition causes pain and muscle spasms that worsen over the years.
According to Contact A Family, the condition is characterized by “progressive stiffness and painful spasms in the back and limbs, which are often triggered by touch, noise or anxiety, and exacerbated by movement.”
There is currently no cure, but death from the condition is rare.
Strong spasms to the chest can sometimes cause difficulty breathing.
She pointed her fingers to her throat and changed her voice, demonstrating how her strangled voice would sound.
“It’s like someone’s pushing your larynx this way,” Celine said.
“It’s like you’re talking like that.”
Celine’s voice spasmed as she said her voice can’t go higher or lower when that happens.
“It gets into a spasm,” she explained.
The singer also explained that she had once broken a rib due to one of the spasms.
Her fingers also get into a cramping position sometimes where she “cannot unlock them.”
STEPPING AWAY
Since being diagnosed with Stiff Person Syndrome, Celine has stepped away from the spotlight.
The rare neurological disorder can take away the ability to walk or even talk, according to the University College London (UCL).
She first revealed her diagnosis in 2022 and a few months later had to cancel her world tour.
Celine will reveal even more of what she goes through in her upcoming Amazon Prime Video documentary, I Am: Celine Dion, out June 25.
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In a preview for the documentary, the singer admitted that she misses performing so much but has a dedication to moving forward.
“If I can’t run, I’ll walk. If I can’t walk, I’ll crawl,” Celine said.
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Celine had to take care of her kids, hide from the public, and be a hero, all while battling her illness because her husband was dealing with cancer at the timeCredit: NBC
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The singer also said that not being able to tell anyone about her illness had put a big burden on herCredit: NBC
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Since announcing her diagnosis in 2022, Celine had to cancel her world tour, due to not being able to stand or walk for a long timeCredit: Getty
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The mother-of-three admitted last week that it feels like someone is strangling her when she talks
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