Celine Dion is not letting her battle with stiff person syndrome define who she is as a person and a performer.
The “My Heart Will Go On” singer, 55, posted a heartfelt missive on Instagram amidst Tuesday’s news that Prime Video has bought the worldwide rights to Oscar nominee Irene Taylor’s documentary about Dion titled, “I Am: Celine Dion.”
“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,” the Canada native wrote.
“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 continued.
“During this absence, I decided I wanted to document this part of my life, to try to raise awareness of this little-known condition, to help others who share this diagnosis.”
Stiff person syndrome (SPS) is a progressive, extremely rare, incurable disorder that causes the body to attack its nerve cells.
It causes painful muscle spasms and is usually diagnosed in people ages 30 to 50, according to Columbia University.
It reportedly affects 1 in a million people.
Dion disclosed her condition in an Instagram video in December 2022.
“While we’re still learning about this rare condition, we now know this is what’s been causing all the spasms I’ve been having,” she wrote at the time. “As you know, I’ve always been an open book and I wasn’t ready to say anything before, but I’m ready now.”
“Unfortunately, these [muscle] spasms affect every aspect of my daily life, sometimes causing difficulties when I walk and not allowing me to use my vocal cords to sing the way I’m used to.”
Dion announced last May that she was canceling her “Courage World Tour” amid her battle with the disease.
“It is with tremendous disappointment that we have to announce today the cancellation of the Courage World Tour,” she posted on Instagram.
“I’m so sorry to disappoint all of you once again. I’m working really hard to build back my strength, but touring can be very difficult even when you’re 100%.”
“I Am: Celine Dion,” which does not yet have a premiere date, was filmed over the course of a year and takes an inside look at Dion, starting with her revealing her battle with SPS and how it’s affected her career and her relationship with her fans.
Last November, Dion made her first public appearance in nearly four years when she attended an NHL game between the Vegas Golden Knights and her hometown team, the Montreal Canadiens, in Las Vegas.
She was accompanied by René-Charles, 22, and twins Nelson and Eddy, 13, the sons she had with her late husband, René Angélil, who died in 2016 after battling throat cancer.
“Celine Dion is a global megastar with a career defined not only by her extraordinary work ethic and passion, but by her dedication to her fans,” said Jennifer Salke, the head of Amazon MGM Studios, in a statement regarding “I Am: Celine Dion.”
“This documentary is a raw, intimate portrayal of a pivotal time in her personal life and career, pulling back the curtain on her journey as she overcomes an unthinkable diagnosis.
“It’s an honor to be trusted with her story, and we can’t wait to share it with Prime Video audiences around the world.”
