On March 15 — International Stiff Person Syndrome Awareness Day — Céline Dion had a message for her fans: “I remain determined to one day get back onto the stage and to live as normal of a life as possible,” the “My Heart Will Go On” singer, who was diagnosed with the debilitating condition in 2022, wrote in an emotional Instagram message. “Trying to overcome this autoimmune disorder has been one of the hardest experiences of my life. I am deeply grateful for the love and support from my kids, family, team and all of you!”

Céline, 56, is opening up even more about her condition — which causes painful muscle spasms and inhibits movement — in the upcoming documentary I Am: Céline Dion. “She hopes to share a glimpse into her life and her battle with SPS,” says an insider. “She knows there are a lot of questions about her health and her current state, and she wants her fans to know that she is fighting her hardest.”

When Céline health began to deteriorate in 2021, she was forced to postpone her Las Vegas residency before ultimately canceling it — as well as the remainder of her Courage world tour.

“There was a lot of confusion and fear before she learned she had SPS,” says a source. “Doctors were trying to figure out what was wrong for a long time.”

After she was finally diagnosed, the recording artist opted to stay out of the limelight, rarely going out in public. But now she’s done hiding. Aside from quietly attending a series of hockey games in Las Vegas, she received a standing ovation in February at the 2024 Grammys — where she presented the Album of the Year Award.

“She knows that people are so curious about her illness — there are a lot of questions about her current state,” says the source. “It is very brave of Céline to agree to this documentary. She is being extremely honest and vulnerable by giving such a glimpse into her health battle.”

The film covers about a year of Céline’s life as she learns to live with and manage her SPS, which has made it difficult for the star to walk and use her vocal cords to sing in the way she’s accustomed to. According to her sister, Claudette Dion, 75, the musician has had “no control over her muscles” as of December 2023.

“She is fighting her hardest and refusing to give up,” notes the source. “Céline is incredibly resilient.”

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