Celine Dion opens up about stiff person syndrome diagnosis following Grammys appearance

Celine Dion is giving fans a glimpse into her struggles living with stiff person syndrome.

On Friday, the music icon recognized International Stiff Person Syndrome Awareness Day with a heartfelt Instagram post in a rare photo surrounded by her three sons: René-Charles, 23, and her 13-year-old twins, Nelson and Eddy.

"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," Dion said in the caption, referencing her diagnosis announcement video on the platform in Dec. 2022.

"I am deeply grateful for the love and support from my kids, family, team and all of you! I want to send my encouragement and support to all those around the world that have been affected by SPS. I want you to know you can do it! We can do it!" Dion ended the post, before signing off with love to her supporters.

Dion's post comes one month after the star surprised viewers and a star-studded audience alike when she walked out to her hit "The Power of Love" to present Album of the Year at the 2024 Grammys. The five-time Grammy winner in her own right was accompanied by her oldest son René-Charles at the awards ceremony.

"Thank you all. I love you right back," Dion said, donning a pastel gown and brown coat. "When I say that I’m happy to be here, I really mean it from my heart."

But her rare public appearance also stirred controversy when the award's winner Taylor Swift walked onstage and seemingly snubbed Dion by grabbing the award without saying anything to the international music icon. Later, Swift and the living legend embraced backstage and grinned in a photo together.

Celine Dion health:Singer lost control over muscles amid stiff-person syndrome, her sister says

Upcoming Prime Video documentary will detail Céline Dion's stiff person syndrome diagnosis

In January, Amazon MGM Studios announced "I Am: Celine Dion," a feature-length documentary that will stream worldwide on Amazon Prime Video after acquiring worldwide rights to the film. A release date is unknown.

Irene Taylor, an Academy Award-nominated filmmaker, followed Dion for more than a year for the documentary, which promises to capture "a global megastar's never-before-seen private life," according to a press release.

"This intimate exploration takes viewers on a journey inside Celine's past and present as she reveals her battle with Stiff Person Syndrome (SPS) and the lengths she has gone to continue performing for her beloved and loyal fans," the press release stated.

What is stiff person syndrome?

Stiff person syndrome, or SPS, is a rare "neurological disorder with features of an autoimmune disease," the National Institute of Neurological Disorders and Stroke notes.

"It's a disease that's characterized by progressive muscle stiffness, muscle spasms, rigidity – typically in the muscles of the back, specifically the lower back, as well as the upper legs," Dr. Kunal Desai, a Yale Medicine neurologist and assistant professor of neurology who specializes in neuromuscular disease, previously told USA TODAY.

The disease causes "progressive muscle stiffness and painful spasms" that can be triggered by environmental factors such as "sudden movement, cold temperature or unexpected loud noises," Johns Hopkins Medicine said. 

With extreme muscle spasms, "the muscles can feel tight as a rock. So, it can be very, very uncomfortable and painful," Desai said at the time, adding that other stimuli that can provoke these spasms sometimes include touching the muscles, "certain subtle movements" and stress.

Contributing: KiMI Robinson, Wyatte Grantham-Philips