If there’s one voice that transcends generations, it’s definitely Celine Dion’s. With a career spanning over forty years, Celine Dion has fans that range from my aunts to my age mates. As such, it was such a blow to the chest when the Grammy winner disappeared from the spotlight two years ago after being diagnosed with a rare condition. Now, the 56-year-old is back in the spotlight, discussing the condition that’s taken her voice away.
Celine Dion Opens Up About Stiff Person Syndrome
“It’s like somebody is strangling you. It’s like somebody is pushing your larynx/pharynx.” – Celine Dion, NBC
In December 2022, Celine Dion took to Instagram to share her diagnosis of stiff person syndrome. Months later, she canceled all remaining tour dates.
According to the National Institute of Neurological Disorders and Stroke, stiff person syndrome is a rare and progressive autoimmune neurological condition, affecting only 1 or 2 people per million. Impacting twice as many women as men, between the ages of 30 and 50, stiff person syndrome can affect quality of life.
Now, the exact cause of stiff person syndrome remains unknown. Yet, researchers believe it’s linked to a specific antibody called GAD65. In Celine Dion’s case, her doctors may have identified something in her blood that may explain why she has the condition.
Similar to other autoimmune conditions, diagnosis of stiff person syndrome can be tricky. Thus, those living with the condition may often have to find ways to mitigate symptoms, with an official diagnosis.
Speaking to TODAY’s Hoda Kotb, Dion shared that she learned to rely on high doses of Valium to help manage her undiagnosed muscle spasms,
“I did not know, honestly, that it could kill me,” she said.
“I would take, for example, before a performance, 20 milligrams of Valium, and then just walking from my dressing room to backstage, it was gone already.”
She recalled that she soon moved up to the lethal dose of 90 milligrams a day because her body had become too accustomed to the doses.
Speaking to Healthline, Shailee Shah, MD, an Assistant Professor in Neuroimmunology, added that since stiff person syndrome is a tricky diagnosis, it’s imperative to find a neurologist should there be any suspicion of the condition, as this would be the “most important part of the diagnosis.”
What are the symptoms?
The most common symptom associated with stiff person syndrome is, as the name suggests, muscle stiffness that impacts quality of life,
“If I cook — because I love to cook — my fingers, my hands, will get in position. … It’s cramping, but it’s like in a position where you cannot unlock them,” shares Dion. Aside from muscle stiffness, painful spasms in the abdomen, back, and limbs are also part of the deal, with Dion sharing that spasms sometimes cause difficulties when she walks. They prevent her from using her vocal cords to sing the way she’s used to.
“I have broken ribs at one point because sometimes when it’s very severe, it can break some ribs as well.”
With symptoms affecting quality of life, this leads to other psychiatric symptoms. According to one study, anxiety, and depression were both identified as the most common psychiatric symptoms of stiff person syndrome.
Managing stiff person syndrome
“I haven’t beat the disease, as it’s still within me and always will be. I hope that we’ll find a miracle, a way to cure it with scientific research, but for now I have to learn to live with it. So that’s me, now with Stiff Person Syndrome.”
Yes, there is no known cure for stiff person syndrome. But there are lifestyle habits and therapies that can help manage symptoms and improve quality of life.
Speaking to Vogue France, the mom of three shared that she would either have to find a way to manage her symptoms, or ‘switch off, and it’s over’. As such, she now undergoes athletic, physical and vocal therapy five days a week,
“I work on my toes, my knees, my calves, my fingers, my singing, my voice… I have to learn to live with it now and stop questioning myself,” she shared.
Aside from therapies like stretching, yoga and massages, doctors may even prescribe medication to help calm the central nervous system and relax muscles.
Takeaway
Celine Dion is an absolute legend in my books, and it’s so unfortunate to learn about the condition that’s been affecting her. Yet, speaking about it raises awareness, and this may lead to a cure. In the meantime, the songstress is doing her best to not only manage her condition, but to continue to enjoy an incredible life, both on and off the stage,
“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!”
References
Dalakas, M. C. (2022). Stiff-person Syndrome and GAD Antibody-spectrum Disorders: GABAergic Neuronal Excitability, Immunopathogenesis and Update on Antibody Therapies. Neurotherapeutics, 19(3), 832-847. https://doi.org/10.1007/s13311-022-01188-w
Goux, C. (2024). Céline Dion talks beauty secrets with Vogue France: ‘I’m very proud that at 55, I’m being asked to reveal my beauty’. Vogue France. https://www.vogue.fr/article/celine-dion-may-cover-vogue-france-interview
Johns Hopkins Stiff Person Syndrome Center. https://www.hopkinsmedicine.org/neurology-neurosurgery/specialty-areas/stiff-person-syndrome
Kubota, S., Calvario. L. (2024). Céline Dion tells Hoda Kotb that her stiff person syndrome taught her to talk to her kids: Biggest revelations. Today. https://www.today.com/health/news/live-blog/celine-dion-hoda-kotb-interview-live-updates-rcna156430
Mammoser, G. (2024). Celine Dion Shares Details About Living with Stiff-Person Syndrome. Healthline. https://www.healthline.com/health-news/celine-dion-stiff-person-syndrome-details
Nasri, A., Gharbi, A., Ouali, U., Mrabet, S., et al. (2023). Psychiatric Symptoms in Stiff-Person Syndrome: A Systematic Review and a Report of Two Cases. Journal of the Academy of Consultation-Liaison Psychiatry, 64(2), 183–191. https://doi.org/10.1016/j.jaclp.2022.07.005
National Institute of Neurological Disorders and Stroke (2023). Stiff-Person Syndrome. https://www.ninds.nih.gov/health-information/disorders/stiff-person-syndrome.
