Céline Dion Reveals Struggles with Stiff-Person Syndrome in New Documentary

Dion battles SPS, sharing her struggles and triumphs in the documentary “I Am: Céline Dion”

Céline Dion in Los Angeles in February. (PHOTO: VIA PEOPLE, EMMA MCINTYRE/GETTY)
Céline Dion in Los Angeles in February. (PHOTO: VIA PEOPLE, EMMA MCINTYRE/GETTY)

Céline Dion is opening up about her challenging journey with stiff-person syndrome (SPS) in her new documentary, “I Am: Céline Dion,” which premieres globally on June 25 on Prime Video.

The documentary offers an intimate look at the singer’s life since her diagnosis in August 2022, capturing both her triumphs and tribulations as she navigates this rare and painful condition.

In a poignant scene near the end of the film, Dion, 56, makes a brave return to the recording studio. It’s a tentative step back into a world she loves, showcasing her determination despite the limitations imposed by her condition.

However, the victory is short-lived as she soon experiences severe spasms in her foot during a subsequent physical therapy session.

The film captures the raw and excruciating reality of SPS as Dion’s body locks up in pain. Her care team swiftly administers diazepam nasal spray to alleviate the symptoms, prepared to call emergency services if her condition worsens.

This harrowing moment is a stark reminder of the unpredictability and severity of SPS, a disorder characterized by severe muscle stiffness and spasms.

“Every time something like this happens, it makes you feel so embarrassed,” Dion admits in the documentary.

“I don’t know how to express it… you don’t like to not have control of yourself, you know?” Her words reflect the emotional toll of the disorder, adding a personal dimension to the physical suffering she endures.

Céline Dion in 'I Am: Céline Dion'. (PHOTO: VIA PEOPLE, COURTESY OF PRIME VIDEO)
Céline Dion in ‘I Am: Céline Dion’. (PHOTO: VIA PEOPLE, COURTESY OF PRIME VIDEO)

Dion’s crisis, filmed by director Irene Taylor’s crew, was an unexpected event that underscored the gravity of SPS.

“One part of the [SPS] condition is that overstimulation — whether it’s happiness, whether it’s sadness, whether there’s sound, a surprise — can put me into a crisis,” Dion explains. “I was fine, and then something was triggered.” 

For Taylor, witnessing the episode up close was a profound experience. “That was truly an extraordinary thing, not only for Céline to experience, but for me to witness,” she says.

Taylor continued filming during the episode, capturing the stark reality of the disorder. By the time the documentary was in post-production, Taylor and Dion had formed a deep bond.

Taylor felt confident including the footage in the film, believing in Dion’s openness and honesty.

The documentary not only sheds light on Dion’s personal battle but also aims to raise awareness about SPS, a rare and often misunderstood condition.

Dion hopes to use her platform to humanize the disorder and support scientific research aimed at finding a cure. “Neuropathy can be really wide,” she says.

“That’s why I’m trying to be really involved in raising funds for people to consult and talk about it with their neighbor, their friend, their husband.”

Dr. Amanda Piquet, the director of the autoimmune neurology program at the University of Colorado Anschutz Medical Campus, diagnosed Dion with SPS. She speaks optimistically about the future of treatment for the condition.

Céline Dion with director Irene Taylor and a cameraman. (PHOTO: VIA PEOPLE, COURTESY OF PRIME VIDEO)
Céline Dion with director Irene Taylor and a cameraman. (PHOTO: VIA PEOPLE, COURTESY OF PRIME VIDEO)

“The future for SPS is bright and there’s a lot on the horizon,” Dr. Piquet says, highlighting the ongoing research and potential advancements in understanding and treating the disorder.

Dion’s openness about her struggles is not just a testament to her resilience but also a call to action for better support and research for those affected by SPS.

Her documentary serves as a beacon of hope and a source of strength for many dealing with similar health challenges.

Through her story, Dion emphasizes the importance of empathy, understanding, and the relentless pursuit of medical advancements.

As “I Am: Céline Dion” prepares to stream globally, it promises to be more than just a film about a superstar’s life.

It’s a powerful narrative about overcoming adversity, raising awareness, and fostering a community of support for those battling rare conditions like SPS.

Dion’s journey, marked by pain and perseverance, is set to inspire and educate viewers worldwide.

The documentary is not only a celebration of Dion’s career and life but also a crucial step in bringing attention to stiff-person syndrome.

By sharing her story, Dion hopes to make a difference in the lives of others, advocating for greater awareness, compassion, and scientific progress in the fight against this debilitating disorder.

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