Céline Dion is sharing a hopeful message with her fans, speaking openly about living with stiff person syndrome (SPS) and remaining optimistic that she might be well enough to return to the stage one day.
On Friday, the Quebec superstar shared a photo to Instagram, posing with her three sons atop a podium for go-karting company K1 Speed. In the photo, Dion drapes her arms over the shoulders of her 13-year-old twin sons, Eddy and Nelson, while her eldest son, 23-year-old René-Charles, sits at her feet.
“Today the world recognizes International SPS Awareness Day,” the singer, 55, wrote.
“As many of you know, in the fall of 2022, I was diagnosed with Stiff Person Syndrome (SPS). Trying to overcome this autoimmune disorder has been one of the hardest experiences of my life, but I remain determined to one day get back onto the stage and to live as normal of a life as possible. I am deeply grateful for the love and support from my kids, family, team and all of you!”
She concluded the post with a message of encouragement for anyone affected by SPS.
“I want you to know you can do it! We can do it!” she wrote, signing off, “Love Celine xx.”
The announcement was also posted in French.
Dion revealed her diagnosis with SPS, a rare autoimmune disorder, in the fall of 2022 and went on to cancel all the remaining dates in her world tour.
“I’m so sorry to disappoint all of you once again,” she said in a statement last May. “I’m working really hard to build back my strength, but touring can be very difficult even when you’re 100 per cent.”
Last August, Dion’s sister Claudette said that another of their sisters, Linda, had moved in with Dion to help with her care.
“When I call her and she’s busy, I speak to my sister Linda who lives with her and tells me that she’s working hard. She’s listening to the top researchers in the field of this rare disease as much as possible,” Claudette told Le Journal at the time.
“I honestly think that she mostly needs to rest. She always goes above and beyond, she always tries to be the best and top of her game. At one point, your heart and your body are trying to tell you something. It’s important to listen to it.”
The cause of SPS still eludes researchers, “but researchers suspect that it may be the result of an autoimmune reaction where the body attacks nerve cells in the central nervous system that control muscle movement,” Yale University writes.
Many people with SPS develop muscle rigidity, stiffness and spasms in their torso and limbs and require mobility devices like walkers and wheelchairs.
“The muscle spasms can be so severe they cause the person to fall down. The muscles gradually relax after the stimulus is gone,” the Yale Medicine website states, adding that the spasms can be triggered by environmental stimuli, like loud noises or emotional stress.
In recent months the chanteuse has made a couple of visits to Canadian hockey teams, most recently appearing behind the scenes with the Edmonton Oilers in Las Vegas last week.
In an Oilers video posted to Instagram, she had left winger Zachary Hyman cracking up with her impersonation of hockey players.
“It’s exciting to meet those big guys, just like, on flat shoes. I cannot imagine them up on skates with all the equipment going like,” she said, as she pantomimed crouching down into a face-off position, pretending to hold a hockey stick.
Her biggest surprise appearance, however, happened at last month’s Grammy Awards, when she took the stage to announce Taylor Swift as the winner of Album of the Year.
“Thank you all,” Dion told the crowd as she appeared on stage, smiling through teary eyes. “I love you right back.”
“When I say that I’m happy to be here, I really mean it from my heart.
“Those who have been blessed enough to be here at the Grammy Awards must never take for granted the love and joy music brings to our lives and to people around the world.”
— With files from Global News’ Kalina Laframboise