From announcing a new documentary to her much talked-about appearance at the Grammys, Céline Dion has recently been giving fans a closer look into her life since she was diagnosed with Stiff Person Syndrome in 2022. The singer continued that trend over the weekend when she shared a message on Instagram for International SPS Awareness Day on March 16.
“As many of you know, in the fall of 2022, I was diagnosed with Stiff Person Syndrome (SPS),” Dion wrote. “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.” The caption accompanied a sweet photo of Dion with her three sons, Réne-Charles, Nelson, and Eddy, posing together on a go-karting podium.
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Dion’s battle with SPS has increased awareness of the rare neurological disorder, which affects about 1 to 2 people per every million, according to the Stiff Person Syndrome Research Foundation. The disorder affects the central nervous system, specifically the brain and spinal cord, per the National Institute of Neurological Disorders and Stroke, and can cause symptoms like muscle rigidity in the trunk and severe muscle spasms, which can be triggered by noise, touch, and emotional distress. Over time, people with SBS can develop hunched-over postures or become too disabled to walk or move.
Dion has mostly chosen to battle SPS in private, but recent months have seen the singer letting the public in on her health struggles. Most notably, Dion will be releasing an Amazon Prime documentary called I Am: Céline Dion to document her experience with SPS and raise awareness of the condition, she wrote on Instagram in the documentary announcement. “This last couple of years has been such a challenge for me,” she continued, “the journey from discovering my condition to learning how to live with and manage it, but not to let it define me.”
In a December 2023 update, Dion’s sister, Claudette, explained that SPS makes it difficult for Dion to control her body. “She doesn’t have control over her muscles,” Claudette told Canadian outlet 7 Jours. “What breaks my heart is that she’s always been disciplined. She’s always worked hard.”
Now, Dion is using her platform to call attention to SPS, even as she focuses on returning to the stage and performing once again. “I want to send my encouragement and support to all those around the world that have been affected by SPS,” she wrote in her SPS Awareness Day post. “I want you to know you can do it! We can do it!”
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Before you go, read about the other celebs raising awareness for their own chronic conditions:
