The 'My Heart Will Go On' hitmaker candidly talks about living with SPS, describing the agonizing torment caused by her rare condition in a new TV interview.
- Jun 7, 2024
AceShowbiz - The legendary Celine Dion has recently opened up about her grueling battle with the rare neurological condition Stiff Person Syndrome (SPS), shedding light on the incredible personal struggle she's faced in fighting an affliction that has sidelined her career and impacted her voice - her most cherished instrument.
In excerpts from an upcoming primetime interview with "Today" show's Hoda Kotb, Dion, 56, described the agonizing pain and physical toll of SPS, which often manifests as debilitating muscle stiffness and spasms.
"It's like somebody is strangling you," Dion explained, vividly recanting how the syndrome affects her voice. "It's like somebody is pushing your larynx... It gets into a spasm." The singer illustrated the symptoms by squeezing her throat, her voice wavering to a weaker pitch to demonstrate the disorder's merciless grip.
Diagnosed with SPS in 2022, Dion's revelations are deeply personal and heartbreaking. The condition, known for causing severe muscle spasms and rigidity, has attacked her abdomen, ribs, spine, and even her fingers, sometimes locking parts of her body into position.
"I have broken ribs at one point because sometimes when it's very severe it can break some ribs as well," she told Kotb. This rare autoimmune disorder has also forced Dion to cancel her 2023 Courage World Tour, with her management divulging that she effectively has "no control" over her muscles.
Dion's battle with SPS has had a significant psychological and emotional toll as well. Speaking with Vogue France, she opened up about the daily struggle of living with a chronic, progressive disease.
"I haven't beat the disease, as it's still within me and always will be. I hope that we'll find a miracle, a way to cure it with scientific research, but for now I have to learn to live with it," Dion said. As part of her treatment, she undergoes athletic, physical, and vocal therapy five days a week, tirelessly working on her joints and voice in the hopes of someday returning to the stage.
Adding another dimension to her story, Prime Video will premiere a documentary on June 25 titled "I Am: Celine Dion", chronicling her struggle with SPS and her journey managing her condition.
While it remains uncertain if or when she'll be able to perform again, Dion's unwavering determination and resilience shine through as she commits to fighting this battle one day at a time. "If I can't run, I'll walk. If I can't walk, I'll crawl. But I won't stop," she said, capturing the indomitable spirit that has endeared her to millions.
Celine Dion's full interview with Hoda Kotb will air on NBC on June 11 at 10 p.m. ET, providing an in-depth look at an icon's life-changing fight against an unrelenting disorder.
