Céline Dion to open up about stiff person syndrome diagnosis in new Amazon Prime documentary

Publish Date
Thursday, 1 February 2024, 5:21PM
Celine Dion has cancelled tours to focus on her health. Photo / Getty Images

Celine Dion has cancelled tours to focus on her health. Photo / Getty Images

Céline Dion is sharing a piece of herself with her fans.

In a new documentary, the Canadian musical icon, 55, will look back on her big wins and demanding past few years since she stopped touring to prioritise her health.

Fans of the My Heart Will Go On singer will be able to stream the film, titled I Am: Céline Dion, on Amazon Prime Video.

I Am: Céline Dion, directed by Oscar-nominated documentarian Irene Taylor, is an intimate exploration of both the acclaimed superstar’s impressive career and her life away from the spotlight, particularly her battle with stiff person syndrome (SPS).

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The documentary will uncover “the lengths [Dion] has gone to continue performing for her beloved and loyal fans” since being diagnosed with the rare and incurable neurological disease that causes the star debilitating muscle spasms, according to the press release.

The synopsis adds: “From visiting her couture touring wardrobe and personal effects to spending time in the recording studio, the documentary captures a global megastar’s never-before-seen private life. An emotional, energetic, and poetic love letter to music, I Am: Céline Dion captures more than a year of filming as the legendary singer navigates her journey toward living an open and authentic life amidst illness.”

The It’s All Coming Back To Me songstress shared a statement about her decision to bring the documentary to life, saying: “This last couple of years has been such a challenge for me, the journey from discovering my condition to learning how to live with and manage it, but not to let it define me.

“As the road to resuming my performing career continues, I have realised how much I have missed it, of being able to see my fans,” Dion shared. “During this absence, I decided I wanted to document this part of my life, to try to raise awareness of this little-known condition, to help others who share this diagnosis.”

Emmy-winning director Taylor, who is at the helm of the Céline Dion project, has directed past hit documentaries such as Beware the Slenderman and Leave No Trace: A Hidden History of the Boy Scouts.

While a release date has not yet been announced, fans will be able to stream the film upon its release on Prime Video.

I Am: Céline Dion comes less than two years after Dion first got candid about her SPS diagnosis. The Grammy winner first shed light on her condition in an emotional clip posted to Instagram at the end of 2022, in which she described her symptoms and announced she would be forced to postpone her tour dates as a result.

According to the Stiff Person Syndrome Foundation, the illness affects the central nervous system, specifically the brain and spinal cord. “Patients can be disabled, wheelchair-bound or bed-ridden, unable to work and care for themselves,” they write, adding that the neurological disease with autoimmune features can have patients struggle with symptoms such as “hyper-rigidity, debilitating pain, chronic anxiety”, and muscle spasms “so violent they can dislocate joints and even break bones”.

In May 2022, Dion announced that she would cancel her tour, which was set to go ahead in April this year, so she could continue to focus on her health on the road to recovery.

An insider close to the musician shed light on Dion’s reason for postponing her tour, saying, “The goal is for her to tour again for sure, but once she is better.”

The source said Dion’s decision to forgo her tour was because she thought “it wasn’t fair to the fans” to keep postponing concerts. “Right now she’s focusing on her health,” they said.

Dion’s sister, Claudette, provided an update about the I’m Alive singer’s health in a September interview with Hello! Canada. “She’s doing everything to recover,” she told the outlet. “She’s a strong woman.”

While the songstress has been focusing on her health and spending time with her family, she reportedly sang in a rare public appearance three months ago when she attended a hockey game between the Vegas Golden Knights and the Montreal Canadiens.

This article was first published in the NZ Herald and is republished here with permission.

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