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Celine Dion says new doc will detail her life with stiff person syndrome and her road back to performing

Samir Hussein/Redferns/Getty Images/File

While Celine Dion’s performing career remains on hold as she lives with stiff person syndrome, a rare neurological disorder, she is chronicling her journey in a new documentary titled “I Am: Celine Dion” and remains optimistic that she’ll one day be able to take the stage again.

“This last couple of years has been such a challenge for me, the journey from discovering my condition to learning how to live with and manage it, but not to let it define me,” she wrote on her Instagram page on Tuesday. “As the road to resuming my performing career continues, I have realized how much I have missed it, of being able to see my fans.”

She added that she wanted to “document” this part of her life through her documentary, “to raise awareness of this little-known condition, to help others who share this diagnosis.”

Dion announced in December 2022 that she was taking time off from professional commitments to focus on her health after revealing her stiff person syndrome diagnosis. At the time, she said the condition did not allow her “to sing the way I’m used to.”

While she released new music and appeared in a film opposite Priyanka Chopra last year, a source close to Dion told CNN in late May that she “will likely never tour again.”

Stiff person syndrome is “a rare, progressive syndrome that affects the nervous system, specifically the brain and spinal cord,” according to the National Institute of Neurological Disorders and Stroke.

“She’s doing everything to recover,” Dion’s older sister Claudette told Hello! Canada in September. “She’s a strong woman.”

According to an official synopsis, “I Am: Celine Dion” will give viewers an intimate look inside her life “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.”

Capturing over a year’s worth of Dion’s life, including “never-before-seen” private moments, the doc will showcase the legendary singer navigating “her journey toward living an open and authentic life amidst illness.”

“I Am: Celine Dion” will be directed by Oscar-winning director Irene Taylor and will stream on Prime Video, according to the news release.

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