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Céline Dion on Stiff Person Syndrome Diagnosis: ‘Nothing is Going to Stop Me’

By Loren Gutentag · April 25, 2024

Singer Céline Dion opens up about Stiff Person Syndrome (SPS)

Singing legend Céline Dion was forced to put her career on hold and cancel all of her 2023 and 2024 tour dates after being diagnosed with stiff person syndrome (SPS), a rare and debilitating condition. In a recent interview with Vogue France, the singer is opening up about her diagnosis. She recounts, "At the beginning, I would ask myself: why me? How did this happen? What have I done? Is this my fault?"   Yoyo76300, CC BY-SA 3.0, via Wikimedia Commons

What is stiff person syndrome (SPS)?

According to the National Institute of Neurological Disorders and Stroke, Stiff-Person Syndrome (SPS) is an uncommon and progressive neurological disorder which can cause stiffness in the muscles of the trunk (torso), arms, and legs. Individuals may experience increased sensitivity to noise, touch, and emotional distress, often triggering muscle spasms. Over time, they may also appear to have hunched-over posture. And, some may become severely disabled, experiencing difficulties in walking or moving.  Photo by Online Marketing on Unsplash

Who is at higher risk of developing SPS?

Stiff-person syndrome (SPS) disproportionately affects females, with twice as many cases reported in women compared to men. Additionally, people with SPS often have autoimmune conditions like type-I diabetes, thyroiditis, vitiligo, and pernicious anemia. Scientists don't yet understand what causes SPS, but research indicates that it is the result of an autoimmune response gone awry in the brain and spinal cord.  Photo by Joyce Hankins on Unsplash

Is there a cure for SPS?

 As of now, there is no known cure for Stiff Person Syndrome and treatment primarily focuses on managing symptoms and improving quality of life through physical therapy, medication, and other supportive measures.  Egghead06, CC BY-SA 4.0 via Wikimedia Commons

Céline Dion’s Therapeutic Interventions

In Céline Dion’s case, she shares that she undergoes rigorous therapy sessions five days a week to manage her condition. These sessions include athletic, physical, and vocal therapy to address various aspects of her symptoms, from muscle stiffness to maintaining vocal strength. In her Vogue France interview she said, “Life doesn't give you any answers. You just have to live it! I have this illness for some unknown reason," she said. "The way I see it, I have two choices. Either I train like an athlete and work super hard, or I switch off and it's over, I stay at home, listen to my songs, stand in front of my mirror and sing to myself. I've chosen to work with all my body and soul, from head to toe, with a medical team. I want to be the best I can be. My goal is to see the Eiffel Tower again!"
She added, "I have this strength within me. I know that nothing is going to stop me."  RepliCarter, CC BY-SA 3.0, via Wikimedia Commons

Céline Dion’s Future

Despite her positive mindset, Céline Dion recognizes the uncertainty surrounding her return to the stage. She remains hopeful but realistic, listening to her body's signals and understanding that her health journey may influence her career. When asked what is helping her in this fight  against SPS, she tells Vogue France, “Above all, the love of my family and my children, the love of the fans too, and the support of my team."  Anirudh Koul, CC BY 2.0, via Wikimedia Commons