10 June 2024, 15:20
In a candid and emotional interview, legendary singer Celine Dion revealed her long and arduous battle with Stiff Person Syndrome, a rare neurological disorder. Diagnosed in 2022, Celine bravely shared that her struggle had been ongoing for 17 years, a period marked by pain, secrecy, and immense personal strength.
Celine Dion on the Today Show
Celine Dion opens up about her 17-year battle with Stiff Person Syndrome during an interview on the Today Show. (Picture: NBC)
Speaking with Today Show host Hoda Kotb, Celine described the emotional toll of hiding her condition from her devoted fans. The weight of this secret, she admitted, felt like an unbearable burden. She strived to maintain her public persona, a beacon of strength and resilience, while her body was slowly betraying her.
The singer confessed that the initial years of her struggle were further complicated by her husband René Angélil’s battle with throat cancer, which ultimately claimed his life in 2016.
“We did not know what was going on [with me],” she said. “I did not take the time… I should have stopped, took the time to figure it out. And like it wasn’t enough, my husband as well is fighting for his own life.”
Raising her three children, René-Charles (23) and twins Nelson and Eddy (13), while navigating her career and grappling with her deteriorating health became a balancing act shrouded in secrecy.
“I had to raise my kids, I had to hide, I had to try to be a hero – while feeling my body leaving me,” she continued. “[I was] holding on to my own dreams.”
However, the strain of maintaining this facade eventually became insurmountable, leading Celine to share her truth with the world.
Hoda Kotb, reflecting on the interview, highlighted the severity of Celine’s condition, revealing that the singer had been experiencing symptoms like voice loss, frequent falls, and an overall failure of her body for 17 years. Despite these challenges, Celine remains determined to overcome this hurdle and is actively pursuing recovery.
Celine Dion gets emotional discussing her Stiff Person Syndrome diagnosis in a trailer for her upcoming documentary.
Stiff Person Syndrome, a rare and degenerative neurological disorder, causes uncontrollable muscle spasms and stiffness, progressively limiting mobility and speech. While there is no cure, treatments can help manage symptoms and slow the progression of the disease. Celine, a testament to her unwavering spirit, continues to explore these options.
Singing, once a source of joy and liberation, became a painful reminder of her condition. Celine described the feeling as “somebody is strangling you,” revealing the immense effort required to maintain vocal control amidst the unpredictable spasms.
Undeterred, Celine embraces a rigorous schedule of “athletic, physical and vocal therapy” five days a week, her determination to reclaim her voice a beacon of hope.
Despite having to cancel her performances in 2022 following her diagnosis, Celine remains committed to connecting with her fans. Her upcoming documentary, I Am: Celine Dion, premiering on Amazon Prime on June 25, offers an intimate glimpse into her journey with Stiff Person Syndrome. The trailer, filled with raw emotion and unwavering strength, showcases Celine’s fight to reclaim her voice and return to the stage.
