Céline Dion, one of the world’s most well-known French Canadian artists, is eyeing her return to the stage after stiff-person syndrome forced her to cancel her 2024 tour and Las Vegas residency.
The rare neurological disorder, which Dion went public with in 2022, affects the muscles and body, making live performance difficult. However, through a treatment regimen and a specialized medical team, the pop icon is heading back to the spotlight — and potentially paving the way for others with the condition.
Stiff-person syndrome is a rare neurological disorder that causes muscle stiffness and painful spasms, according to the National Institute of Neurological Disorders and Stroke.
“It’s like somebody is strangling you. It’s like somebody is pushing your larynx/pharynx,” Dion told NBC’s “Today” show in an interview following her diagnosis. “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.”
Affecting about one in a million people, the rarity of stiff-person syndrome has historically made it difficult for scientists to pinpoint its causes or treatments. Symptoms often include a rigid posture, unsteadiness, chronic pain and exaggerated curve in the lower back. If chest muscles are affected, patients may also experience shortness of breath and acute anxiety.
Current research suggests stiff-person syndrome is a condition where the immune system attacks the central nervous system. Because the disease is so rare, there is currently no cure. The medical treatments used to lessen symptoms vary from patient to patient.
“We don’t have FDA-approved therapies for this disease. While we use these treatments, everything is off-label,” Dr. Amanda Piquet, the physician who diagnosed Dion, told People. “I’ve certainly had patients that have clear improvements with these therapies, but we need clinical trials and research to tell us what truly is best.”
Piquet described Dion’s recovery efforts as a “full-time job,” noting the singer is “incredibly motivated and determined.”
Dion supported those thoughts in a since-deleted 2022 social media post, according to Today: “I’m working hard with my sports medicine therapist every day to build back my strength and my ability to perform again,” she said. “But I have to admit, it’s been a struggle.”
There is no cure for the disease, but some treatments can help manage the symptoms, and in some cases, slow its progression. After a patient is diagnosed with the disease, custom treatment plans are developed based on the symptoms they are experiencing. Certain medications can help manage symptoms, while others target the immune system. Other treatments include physical therapy focusing on stretching deep tissue and heat therapy, aquatic therapy, heating pads, chiropractic treatments, massage, yoga, Pilates training, cognitive behavioral therapy and many more, according to Johns Hopkins Medicine.
Typically a combination of both medication and non-medication treatments is the most effective approach in lessening the intensity of the symptoms over time, but it takes time to develop the right combination for each patient.
Dion’s effect on rare disease awareness
Dion’s transparency is spreading awareness for the disease and those who suffer with it. A study published in the International Journal of Environmental Research and Public Health suggests that celebrity disclosures — like Muhammad Ali and Michael J. Fox’s work with Parkinson’s disease — can accelerate public awareness and research funding.
Researchers noted that Dion’s diagnosis may lead to earlier detection and intervention for others, as she admitted to People that she ignored symptoms for 17 years before seeking a formal diagnosis.
Dion’s upcoming concert dates
If all continues to go well managing the singer’s symptoms, Dion is set to perform 10 nights in Paris, beginning on Sept. 12 with the final concert date being Oct. 14, as previously reported by Deseret News.