Celine Dion has opened up about her battle with stiff person syndrome, a rare neurological disorder that has significantly impacted her ability to perform. In an exclusive interview with TODAY’s Hoda Kotb, Dion shared the challenges she faces while trying to sing with this condition.
In a preview clip from the interview, Dion described the sensation as if someone were trying to strangle her. “It’s like somebody is pushing your larynx/pharynx this way,” she said, demonstrating the pressure on her neck. This condition has caused her pitch to change unexpectedly.
Initially, Dion experienced spasms in her vocal cords, which she didn’t find alarming. However, the condition has since spread to other parts of her body, affecting her abdomen, ribs, spine, hands, and feet. “It feels like if I point my feet, they will stay in a stuck position,” she explained. Even simple activities like cooking have become challenging as her fingers and hands can lock up.
Her ribs have even broken due to severe spasms. “Sometimes, when it’s very severe, it can break some ribs as well,” she shared. Dion’s interview with Hoda Kotb is set to air on June 11 at 10 p.m. ET on NBC, where she will also discuss her life with the syndrome in a new documentary, “I Am: Celine Dion.”
The documentary, premiering on June 25, will provide an in-depth look at her journey to perform again despite her illness. In the trailer, Dion reveals the profound impact the condition has had on her life. “I have been diagnosed with a very rare neurological disorder, and I wasn’t ready to say anything before, but I’m ready now,” she says.
Since her diagnosis in December 2022, Dion has been updating fans about her health. In a recent Vogue interview, she mentioned that her happiness has returned since going public with her diagnosis. “It has been a big burden on my shoulders, and a lot of that weight’s gone,” she said. “Now I can just focus on reality. That’s wonderful.”
In another interview with Vogue France, Dion shared that she is learning to live with her illness and has been receiving various therapies five days a week. “I work on my toes, my knees, my calves, my fingers, my singing, my voice,” she said. “Either I train like an athlete and work super hard, or I switch off and it’s over.”
On March 15, Dion marked International Stiff Person Syndrome Awareness Day with a photo of her and her three sons. She wrote, “Trying to overcome this autoimmune disorder has been one of the hardest experiences of my life, but I remain determined to one day get back onto the stage and to live as normal of a life as possible.”
Earlier in March, Dion was photographed in New York City, appearing to be in good spirits. In February, she made a surprise appearance at the 2024 Grammy Awards to present the album of the year award. She received a standing ovation and expressed her gratitude, saying, “Thank you all, I love you right back. When I say, I’m happy to be here, I really mean it from my heart.”
Despite her struggles, Dion continues to sing behind the scenes. She harmonized with singer Sonyae Elise in a video on Instagram, showing her love for music remains strong. When announcing her documentary in January 2024, Dion’s team shared that she is “on the road to resuming her performing career.”
Stiff person syndrome is a progressive neurological disorder with autoimmune features. It causes muscle stiffness and heightened sensitivity to noise, touch, and emotional stress, leading to painful muscle spasms. The condition can severely affect the quality of life, causing hunched posture and difficulty walking.
According to Johns Hopkins Medicine, stiff person syndrome is extremely rare, affecting only one or two people in a million. It affects twice as many women as men. Dr. Desimir Mijatovic, a pain medicine specialist, explained that the condition can make it very difficult for someone like Dion to sing and perform.
Dr. Scott Newsome, director of the Stiff Person Syndrome Center at Johns Hopkins Medicine, described it as a “devastating disease.” He noted that it often takes about seven years for people to get diagnosed due to its rarity and similarity to other conditions.
There is no cure for stiff person syndrome, but symptoms can be managed with certain drugs and therapies. Patients may initially feel discomfort and stiffness, especially in the lower back or legs. Over time, muscle spasms can be triggered by common sounds, causing people to freeze and fall.
The exact cause of stiff person syndrome is still unknown, but it appears to be an autoimmune response in the brain and spinal cord. It is often associated with other autoimmune diseases like diabetes and thyroiditis.
Dion first revealed her diagnosis in December 2022, postponing tour dates due to the condition. She had been struggling with symptoms for years before receiving a diagnosis. During the pandemic, she finally sought answers and was relieved to have a diagnosis.
In a video posted on Instagram, Dion got emotional as she shared her diagnosis. “We now know this is what’s been causing all of the spasms that I’ve been having,” she said. “Unfortunately, these spasms affect every aspect of my daily life, sometimes causing difficulties when I walk and not allowing me to use my vocal cords to sing the way I’m used to.”
Despite the challenges, Dion remains determined to perform again. “All I know is singing. It’s what I’ve done all my life, and it’s what I love to do the most,” she said. While she cannot predict when she will be able to perform again, her passion and determination remain strong.
Her team has expressed hope that she will be able to tour again someday. Dr. Mijatovic, who is not involved in Dion’s care, believes it is possible for her to perform again. “People like Celine are oftentimes able to overcome a lot of amazing things, and I definitely think it’s something that’s possible,” he said.
