CELINE Dion has spoken about her diagnosis of Stiff Person Syndrome and how it affects her daily life.
The singer admitted that “it feels like her body is abandoning her” in a clip from an interview with Hoda Kotb from today.
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Celine, 56, said she had to try to raise her children, be a hero and hide from the public as she felt her body abandon her.
She had to take care of all of this 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 oldest son, René-Charles, 23, with her husband.
The singer also admitted that not telling the truth about her illness was “too much to bear.”
“I couldn’t take it anymore,” said Celine.
She told Hoda she couldn’t say anything right away because she didn’t know what she had.
“We didn’t know what was happening. I didn’t waste any time,” said Celine.
“I should have stopped. Take the time to find out.”
“Lying to me, the burden was too much,” she said.
“Lying to the people who got me where I am today. I couldn’t take it anymore.”
The full primetime special featuring Celine and Hoda, 59, airs Tuesday, June 11 at 10 p.m. ET.
CELINE’S PAIN
Last week, a different clip from Celine’s interview also aired on Today.
In this excerpt, 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 being diagnosed with a rare autoimmune disease
Stiff Person Syndrome is a rare neurological disorder that progresses over time.
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 disease is rare.
Severe chest spasms can sometimes cause difficulty breathing.
She pointed her fingers at her throat and changed her voice, demonstrating what her strangled voice would sound like.
“It’s like someone is pushing your larynx this way,” said Celine.
“It’s like you’re talking like that.”
Celine’s voice cracked as she said that her voice can’t get any higher or lower when this happens.
“He goes into spasm,” she explained.
The singer also explained that she once broke a rib due to one of the spasms.
Her fingers also get in a cramped position at times where she “can’t unlock them.”
Moving 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 about what she goes through in her upcoming Amazon Prime Video documentary, I Am: Celine Dion, which will be released on June 25.
In a preview of the documentary, the singer admitted that she really misses performing, but is dedicated to moving forward.
“If I can’t run, I’ll walk. If I can’t walk, I’ll crawl,” said Celine.
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This story originally appeared on The-sun.com read the full story
