Just over a year ago, Céline Dion was diagnosed with a rare neurological disease called Stiff Person Syndrome. Now, the singer’s sister is updating fans on Dion’s health and how the disease is affecting her body.
“She doesn’t have control over her muscles,” Dion’s sister, Claudette, told 7 Jours in French. “What breaks my heart is that she’s always been disciplined. She’s always worked hard. Our mother always told her, ‘You’re going to do it well, you’re going to do it properly.'”
The Grammy-award winning artist hopes to return to performing, but for now, the future is unclear. “It’s true that in both our dreams and hers, the goal is to return to the stage,” Claudette said. “In what capacity? I don’t know.”
Last December, Dion released an emotional Instagram video explaining her diagnosis to her fans. Speaking in French and English, Dion, 55, said she had been experiencing health issues “for a long time” — including severe muscle spasms that affect “every aspect of my daily life.” Sometimes, she had difficulty walking; other times, she is unable to use her vocal cords to sing properly.
“While we’re still learning about this rare condition, we now know that this is what has been causing all of the spasms that I’ve been having,” she explained.
In May, Dion was forced to cancel her Courage World Tour due to her health. “I’m so sorry to disappoint all of you once again,” she wrote on Instagram at the time. “I’m working really hard to build back my strength, but touring can be very difficult even when you’re 100% … I want you all to know, I’m not giving up… and I can’t wait to see you again!”
For Dion, the priority is her health. “For me to reach you again, I have no choice but to concentrate on my health at this moment,” she explained in the 2022 video. “And I have hope that I’m on the road to recovery. This is my focus, and I’m doing everything I can to recuperate.”
According to the National Institute of Neurological Disorders and Stroke (NINDS), Stiff Person Syndrome is a potentially disabling neurological disorder with features of an autoimmune disease. It affects the central nervous system, specifically the brain and spinal cord. Symptoms include muscle rigidity in the trunk of the body and “heightened sensitivity to stimuli,” which causes the severe muscle spasms Dion mentioned in the video. There is no cure.
Stiff Person Syndrome is classified as rare because it only affects about 1–2 people per every million, according to the Stiff Person Syndrome Research Foundation. As a result, it is often misdiagnosed as more common illnesses with similar symptoms, such Parkinson’s disease, multiple sclerosis, fibromyalgia, or anxiety and phobia disorders. On average, it takes anywhere from five to seven years for patients to get a diagnosis.
According to Claudette, Dion is currently living with their sister, Linda, in Las Vegas while receiving care from specialists in the condition.
A version of this article was originally published in 2022.
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