Celine Dion Departs Hotel in NYC

Celine Dion 'Almost Died' Amid Her Struggle With Stiff Person Syndrome: 'It Was A Scary Time'

Home / Entertainment / Celine Dion 'Almost Died' Amid Her Struggle With Stiff Person Syndrome: 'It Was A Scary Time'

By Favour Adegoke on May 23, 2024 at 7:45 PM EDT

Celine Dion reportedly faced a near-death experience amid her battle with stiff person syndrome.

The disorder has hindered the legendary singer's live performances, but she remains determined to return to the stage to continue doing what she loves.

Dion's struggle is documented in her new film, "I Am: Celine Dion," where she expresses her longing to perform despite her ailment.

Article continues below advertisement

Celine Dion's Stiff Person Syndrome Diagnosis Was 'Scary'

Céline Dion

On a recent episode of "Hoda and Jenna," Hoda Kotb shared that Celine Dion faced a near-death experience during her struggle with stiff person syndrome.

"Celine Dion, at some point, she is now much better, but at some point, she almost died, which is something that she says," Kotb said, hinting at their forthcoming interview. "It was a scary time."

Earlier that day, on the "Today" show, Kotb mentioned her interview with Dion about the rare autoimmune neurological disorder that causes muscle stiffness and painful spasms.

Reflecting on the interview, Kotb said, "She was diagnosed with a terrible disease, and at one point, she wondered if she was going to make it, whether she was going to live through it."

Article continues below advertisement
Article continues below advertisement

"A lot of people are wondering what happened. What was wrong," Kotb said, mentioning that Dion discussed how the disorder has impacted her voice and the "possibility of a comeback."

"We've missed her, and it was a very emotional interview," Kotb added. "We'll see where she stands on her journey back, but I know people are cheering her on."

The full interview with Dion is set to air on Tuesday, June 11.

Article continues below advertisement

Celine Dion Is Determined To Return To The Stage

In the trailer for her new documentary, "I Am: Celine Dion," the "My Heart Will Go On" singer breaks down in tears over her condition.

"I'm working hard every day, but I have to admit, it's been a struggle," Dion says. "I miss it so much."

The Grammy winner, with tears in her eyes, continued, "The people, I miss them," and expressed her determination to return to performing.

"If I can't run, I'll walk. If I can't walk, I'll crawl. And I won't stop. I won't stop," Dion declared.

Dion first revealed her diagnosis of stiff person syndrome in December 2022. In an emotional Instagram video announcing her diagnosis at the time, the "I'm Alive" singer asserted: "All I know is singing. It's what I've done all my life, and it's what I love to do the most."

Article continues below advertisement

Celine Dion Says It Is 'Hard To Cancel A Show'

Celine Dion gives an emotional live performance in Miami hours after her mother passed away

Additionally, Dion's illness forced her to cancel her European tour dates, which were set to begin in February. She also postponed her Las Vegas residency in October 2021 and later canceled her North American tour while undergoing medical tests.

In the documentary, Dion reflected on her music career journey, saying, "I've seen my life, and I love every piece of it."

She noted that while recording music in the studio "sounds great," performing in front of the fans and creating her own "magic" is even greater. "It's not hard to do a show, you know," Dion says. "It's hard to cancel a show."

Celine Dion's Sister Claimed The Singer Lost Control Of Her Muscles

Celine Dion Departs Hotel in NYC in a Flowered Dress

Last year, Dion's sister, Claudette, gave a heartbreaking update about the singer's health. She noted that Dion was diligently working on her recovery; however, her efforts did not contribute much to her recovery, and she had become unable to "control" her muscles.

"What breaks my heart is that she's always been disciplined,' the renowned singer's sister said in an interview with 7 Jours, per the Daily Mail. "She's always worked hard. Our mother always told her, 'You're going to do it well, you're going to do it properly.'"

Claudette added, "It's true that in both our dreams and hers, the goal is to return to the stage. In what capacity? I don't know."

Article continues below advertisement

Celine Dion Made A Surprise Appearance At The 2024 Grammy Awards

Celine Dion poses it up for the photographers on March 03 2020 in New York City

However, Dion made a strong comeback at the 2024 Grammys in February, presenting singer Taylor Swift with the Album of the Year award.

"When I say that I'm happy to be here, I really mean it from my heart," she told the audience, receiving a standing ovation.

Dion added, "Those who have been blessed enough to be here at the Grammy Awards must never take for granted the tremendous love and joy that music brings to our lives and to people all around the world."

"I Am: Celine Dion" will be available for streaming on Prime Video starting June 25.

Article continues below advertisement