Celine Dion has recently shared the profound impact that Stiff Person Syndrome (SPS) has had on her singing career. In a candid conversation with Today co-host Hoda Kotb, Dion described the sensation as akin to being strangled when she attempts to sing. “It’s like somebody is strangling you,” she explained, illustrating the immense pressure on her larynx that prevents her from hitting high or low notes. Her voice, at times, sounded frail as she demonstrated the spasms that have taken control of her muscles.
Stiff Person Syndrome has not only affected Dion’s voice but has also caused severe muscle stiffness in her abdomen, ribs, and spine. The condition, which is incurable, has taken a significant toll on her both physically and mentally. Dion revealed that the muscle cramps have been so intense that they have even led to broken ribs. “I had broken ribs at one point because sometimes it’s very severe,” she shared.
Dion’s battle with SPS is the focus of an upcoming Prime Video documentary, “I Am: Celine Dion,” set to premiere on June 25. The documentary chronicles her journey with the illness, which was first diagnosed in 2022. In a recent interview with Vogue, Dion disclosed that she first noticed difficulties with her voice as far back as 2008. However, it wasn’t until the pandemic in 2020 that doctors were able to accurately diagnose her condition.
In the sneak peek of her interview with Kotb, Dion elaborated on the debilitating effects of SPS. “It can be in the abdominal. It can be in the spine, in the ribs. But it feels like if I point my feet, they will stay in it,” she explained. “Or if I cook, my fingers or my hands will get in position. It’s cramping, but it’s like you’re in the position of you cannot unlock them.”
Kotb noted that the disease is “chronic and progressive,” but there are medications available to help manage it. According to the Mayo Clinic, Stiff Person Syndrome is a rare disorder characterized by involuntary stiffness of axial muscles and painful muscle spasms, often triggered by startle or emotional stimuli.
Dion’s health journey is documented in the new Prime Video docuseries, “I Am: Celine Dion.” The first trailer for the series, released last month, highlights her impressive career and recent struggles. “It’s not hard to do a show, you know? It’s hard to cancel a show,” Dion says in the trailer. “I’m working hard every day but I have to admit, it’s been a struggle. I miss it so much, the people, I miss them. If I can’t run, I’ll walk. If I can’t walk, I’ll crawl. But I won’t stop.”
Dion’s full interview with Kotb is set to air on NBC Nightly News on June 11 at 10 p.m. PT/ET. The special will include new footage from her upcoming Amazon documentary, “I Am: Celine Dion,” which premieres on June 25.
In her conversation with Kotb, Dion also shared that her muscle spasms have been so severe that they have caused her to break ribs. “I have broken ribs at one point because sometimes when it’s very severe it can break some ribs as well,” she said.
The rare disorder has forced Dion to cancel her planned 2023 tour after her sister revealed that the singer had “no control” over her muscles. The muscle spasms and stiffness associated with Stiff Person Syndrome can migrate to other parts of her body, including her spine, feet, and abdomen. “It feels like if I point my feet, they will stay in a (stuck position), or if I cook — because I love to cook — my fingers, my hands, will get in a position. It’s cramping but it’s in a position like you cannot unlock them,” Dion explained.
Dion first began having difficulty controlling her voice after noticing symptoms in 2008. Initially, she thought things would be “fine.” However, as the muscle spasms and stiffness in her hands and feet became more prominent, she realized something serious was happening. The disease is chronic and progressive, but it can be managed with medication. “She’s on the fight of her life right now,” Kotb said in the preview.
In an interview with Vogue France in April, Dion said she has therapy five days a week to strengthen her voice and work on moving her joints. However, she still doesn’t know if, or when, she’ll return to the stage. “I can’t answer that… Because for four years I’ve been saying to myself that I’m not going back, that I’m ready, that I’m not ready,” she told the magazine. “As things stand, I can’t stand here and say to you: ‘Yes, in four months.'”
The full interview will air as a primetime one-hour special on NBC on June 11 at 10 p.m. ET. Watch the preview of Kotb’s Dion sit-down below.
