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Celine Dion's harrowing near-death battle revealed: 'It was a scary time'

The My Heart Will Go On singer is suffering from stiff person syndrome

Faye James
Senior Editor
May 24, 2024
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Celine Dion'sCeline Dion's recent revelation about her harrowing battle with stiff person syndrome has left fans and admirers deeply moved. 

The 56-year-old music icon, renowned for her powerful voice and captivating performances, opened up about her near-death experience in a heartfelt interview with Hoda Kotb.

Hoda, 59, shared a glimpse of their emotional conversation on Thursday’s episode of Today With Hoda & Jenna, revealing that Celine is now doing "much better" but had a terrifying brush with death. 

"It was a scary time," Hoda reflected, emphasizing the gravity of Celine's health struggles.

The emotional first trailer for the documentary 'I Am: Celine Dion'

Earlier in the day, the trailer for Celine’s highly anticipated documentary, I Am: Celine Dion, was released.

The poignant footage brought fans to tears as the beloved singer candidly discussed her battle with stiff person syndrome, a rare autoimmune neurological disorder known for causing muscle stiffness and painful spasms.

Hoda Kotb interviews Celine Dion for a special to air on NBC June 11 at 10 p.m. ET/9 p.m. CT.© NBC News
Hoda Kotb interviews Celine Dion for a special to air on NBC June 11 at 10 p.m. ET/9 p.m. CT.

According to the Cleveland Clinic, this condition is exceptionally uncommon and profoundly debilitating.

Celine revealed that her diagnosis came nearly two years ago, a period marked by fear and uncertainty. "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," Hoda recounted, highlighting the intense emotional and physical toll the disorder has taken on the star.

Celine Dion attends the Grammys© Getty
Celine Dion at the 66th Grammys

The interview shed light on how the condition has impacted Celine's iconic voice, raising questions about her potential comeback. 

"We've missed her, and it was a very emotional interview," Hoda noted. "We'll see where she is on her journey of coming back, but I know people are cheering her on."

Celine's appearance on Today with Hoda & Jenna is scheduled to air on June 11, promising an intimate look into her courageous fight against the disorder.

Celine Dion© Gotham
Celine Dion is battling stiff person syndrome

Adding to the emotional resonance of the day, Amazon Prime unveiled a raw and heartfelt trailer for I Am: Celine Dion.

 The documentary, set to premiere on June 25, offers an unfiltered glimpse into the singer’s life, struggles, and unwavering determination. 

In the trailer, Celine breaks down in tears, revealing the profound effect the degenerative disease has had on her ability to perform.

celine dion documentary© Getty Images
Celine back in 2019

Towards the end of the clip, Celine reassures her fans that she will do everything in her power to save her voice, which she calls "the conductor of my life." She passionately declares, "When your voice brings you joy, you're the best of yourself. I need my instrument."

Celine's openness about her condition marks a significant moment in her journey. 

"I've been diagnosed with a very rare neurological disorder, and I wasn't ready to say anything before, but I'm ready now," she shares in the trailer. "I see my life, and I love every piece of it."

Despite the challenges, Celine remains hopeful about her future. "I'm working hard every day, but I have to admit it's a struggle. I miss it so much. The people... I miss them," she confides. Her resolve is unshakeable, as she declares, "If I can't run I'll walk. If I can't walk, I'll crawl. But I won't stop, she won't stop."

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