Céline Dion Was Afraid Of “Losing Her Life” Amid Battle With Rare Disorder

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Music Legend Céline Dion Was Diagnosed With A Rare Disorder Called Stiff Person Syndrome

Powerhouse vocalist Céline Dion recently granted her first interview since revealing her diagnosis with a rare disorder.

In December 2022, Dion announced she had been diagnosed with an incurable disorder called Stiff Person Syndrome. According to The Cleveland Clinic, Stiff Person Syndrome:

…is a rare autoimmune neurological disorder. People with this condition usually experience muscle stiffness in their trunk and abdomen (the middle part of their body). Over time, they also develop stiffness (rigidity) and spasms in their legs and other muscles. Walking may become difficult, and people become more prone to falls and injury.

In Dion’s case, the disorder “profoundly affect[s] her daily life,” including her ability to walk and sing. “I must admit it has been a struggle. Singing is all I’ve known, it’s been my lifelong passion,” she said.


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A post shared by Céline Dion (@celinedion)


Before revealing her diagnosis, Dion canceled her 2022 North American tour dates and her Las Vegas comeback. After going public with her diagnosis, Dion canceled her Courage World Tour dates for 2023 and 2024.

Céline Dion Sings Again In First Interview Since Revealing Her Diagnosis

Dion has maintained a fairly low profile since sharing the news about her disorder. However, she did make a surprise appearance at the Grammy Awards earlier this year to present the Album of the Year award, which went to Taylor Swift.

Celine Dion has been diagnosed with a rare disorder called Stiff Person Syndrome
Dion presenting at the 2024 Grammy Awards. Photo Credit: CBS / Recording Academy via Entertainment Tonight / YouTube

More recently, Dion sat down with The Today Show‘s Hoda Kotb for her first interview since receiving her diagnosis. Dion said she struggled with her health for 17 years, but never knew what was causing her symptoms.

“She thought it was a cold, allergies,” Kotb said while speaking with Entertainment Tonight about their interview. “She went to the ENT [ear, nose, and throat doctor]. And it would progressively get worse.”

Dion recalled being in Germany and feeling “very, very, very scared” when she started to sound “more nasal.

Then, she finally received her SPS diagnosis. The news was devastating:

I didn’t know how bad it was,” Kotb said about Dion’s disorder. “[Dion] was concerned about losing her life.


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A post shared by Céline Dion (@celinedion)

Dion also told Kotb about sharing the news with her three sons. Her 13-year-old twins, Nelson and Eddy, were also scared.

“Her kids, her twins, she said it was totally terrifying for them. And she explained to them, ‘If mommy doesn’t answer you, it’s because I can’t,'” Kotb relayed.

Dion also sang during her interview to demonstrate how she’s changed the way she performs her songs due to her disorder. She ended her interview by singing a line from her song “Courage.”

Watch Dion’s first interview about her disorder in the video below.