Céline Dion detailed the profound challenges she faces due to stiff-person syndrome, a rare neurological disorder that has drastically affected her ability to perform. The renowned singer discussed her condition in a candid interview with Hoda Kotb on NBC News, marking her first televised conversation about her health since her diagnosis was announced in 2022.
Stiff-person syndrome, as Dion describes, can feel like "somebody is strangling you," particularly affecting her throat where it feels like "somebody is pushing your larynx/pharynx." This has significantly impacted her singing, a career and passion that has defined much of her life. "It's what I've done all my life. And it's what I love to do the most," Dion shared, expressing the deep personal loss the condition has imposed on her.
The severity of her symptoms has at times led to extreme physical outcomes, including muscle spasms so intense they have resulted in broken ribs. Dion highlighted the unpredictability and intensity of these spasms, which can also lock her fingers and hands into painful positions. This condition not only affects her spine and ribs but can manifest in any muscle group, leading to debilitating pain and functional impairment.
Despite the challenges, Dion remains committed to her recovery and return to music. She disclosed undergoing rigorous physical and vocal therapy five times a week, a testament to her determination. This resilience stems from a profound internal struggle with her condition, where she once asked, "Why me? How did this happen? What have I done? Is this my fault?" Yet, she chooses to fight, aiming to reclaim her life and career, with aspirations like seeing the Eiffel Tower again.
The Stiff Person Syndrome Foundation underscores the severity of Dion's condition, noting that it affects the central nervous system and can leave patients disabled, unable to work, or even care for themselves. Symptoms can escalate to the point where muscle spasms are "so violent they can dislocate joints and even break bones," further complicating the lives of those affected.
In her discussion with Kotb, Dion also reflected on moments of despair, revealing that at one point, she felt close to death due to her condition. "It was a scary time," Kotb recounted from their interview, highlighting the gravity of Dion's health struggles.
This candid disclosure comes ahead of the release of a feature-length documentary titled I Am: Celine Dion, set to premiere on Prime Video on June 25. Directed by Oscar-nominated filmmaker Irene Taylor, the documentary promises an intimate look into Dion's battle with stiff-person syndrome.
As Dion's full interview with Kotb is set to air on June 11, her fans and the public brace for a deeper understanding of the trials she faces. Her story is not just one of illness but also of incredible resilience and an unwavering desire to overcome the odds.
