Despite the best efforts of her physicians and loved ones, Celine Dion is struggling to find relief from the debilitating pain caused by the rare disorder that has kept her from performing over the past year.
“It’s an illness we know so little about,” said Claudette Dion, the sister of the “My Heart Will Go On” singer, who has served as Celine’s spokesperson in recent months. In a recent interview with Hello!, she shared an update on her sister’s stiff-person syndrome, which the Grammy winner was diagnosed with in December, forcing Celine, 55, to step away from performing and has since left the public eye.
And as the pain continues, there’s little her family can do, she said.
“There are spasms — they’re impossible to control,” Claudette, 74, continued. “You know people who often jump up in the night because of a cramp in the leg or the calf? It’s a bit like that, but in all muscles. There’s little we can do to support her, to alleviate her pain.”
There is no treatment that cures stiff-person syndrome, according to Johns Hopkins Medicine, which described the condition as a “rare autoimmune neurological disorder that most commonly causes muscle stiffness and painful spasms that come and go and can worsen over time.” In some cases, some people experience other symptoms, such as, unsteady gait, double vision or slurred speech.
The lack of treatment for the disorder has left few options for Dion and her family, with Claudette adding, “We’re crossing our fingers that researchers will find a remedy for this awful illness.”
Following a successful tour before the start of the pandemic in 2020, Dion started to feel the spasms, causing her to gradually pause and postpone performance for treatment. After starts and stalls to her return, she revealed her diagnosis in December, canceling her 2023 shows.
In a video message, the “It’s All Coming Back to Me Now” singer vowed to fans, “I’m not giving up … and I can’t wait to see you again!”
However, her announcement also included a grim picture of a daily life, strained by the disorder. The pop icon and mother of three said the 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.”
Amid her struggle with pain, Dion released her first new music since 2019, a ballad, “Love Again,” about overcoming the grief of losing a loved one. It served as the title track for the romantic comedy of the same name released in May, starring Priyanka Chopra Jonas. Dion recorded five new songs created for the film.
Last month, Dion’s sister gave the first update in months about the hit-maker’s condition, commenting to Le Journal de Montréal that “she listens to the great researchers studying this rare disease as much as possible,” and added, “We can’t find medicine, but giving hope, I find that is important.”
This week, Claudette assured the public that her sister is making good on her promise to continue fighting: “She’s doing everything to recover — she’s a strong woman.”
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