Celine Dion's Battle with Stiff Person Syndrome: An Inside Look

Celine Dion opens up about the challenges of living with Stiff Person Syndrome, a rare neurological disorder that has affected her voice and body, forcing her to cancel her tour and Las Vegas residency.

Celine Dion has been a beloved singer and performer for decades, captivating audiences with her powerful vocals and mesmerizing stage presence. However, her life took a dramatic turn in December 2022 when she was diagnosed with Stiff Person Syndrome (SPS), a rare neurological disorder that affects the central nervous system.

SPS has had a profound impact on Dion's life, as she described in a recent sit-down with "The Today Show" host Hoda Kotb. She explained that singing, once a natural and effortless act, has become a significant challenge.

"It's like somebody is strangling you," Dion said. "It's like somebody is pushing your larynx/pharynx this way," she explained, demonstrating the sensation by pushing her throat back with her hand.

The disorder not only affects her voice but also causes muscle spasms and stiffness throughout her body. "It can also be in the abdominal, can be in the spine, can be in the ribs," Dion said.

One of the most severe symptoms for Dion has been the inability to relax her hands and feet, leaving them in awkward and painful positions. "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. My feet — it's cramping, but it’s like in a position of you cannot unlock them," she said.

The diagnosis forced Dion to cancel her "Courage World Tour" and her Las Vegas residency in 2021. The realization that she could no longer perform as she once did was a devastating blow.

"It's not hard to do a show, you know. It's hard to cancel a show," Dion confides in the trailer for her upcoming Amazon Prime documentary, "I Am: Celine Dion."

Despite the challenges, Dion remains determined to persevere. "I'm working hard every day, but I have to admit, it's been a struggle," she admits. "I miss it so much."

The singer is not sure if she will ever be able to return to the stage, but she refuses to give up hope. "My body will tell me," she said. "On the other hand, I don't just want to wait."

Celine Dion's battle with SPS is a testament to her resilience and the importance of finding strength in vulnerability. Her journey serves as an inspiration to others who face chronic illnesses and reminds us of the fragility of life. As she says, "It's hard, I'm working very hard and tomorrow will be even harder. Tomorrow is another day. But there's one thing that will never stop, and that's the will. It's the passion. It's the dream. It's determination."