Celine Dion documentary to ‘raise awareness’ of singer’s battle with stiff person syndrome

The ‘My Heart Will Go On’ singer announced she had been diagnosed with stiff person syndrome in 2022

A new documentary about Céline Dion hopes to raise awareness about stiff person syndrome, the rare neurological disorder the singer was diagnosed with in 2022.

I Am: Céline Dion, which is set to be released by Amazon-MGM, will focus on a year in the life of the “My Heart Will Go On” singer as she lives and deals with the condition.

In a statement, Dion said: “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.

“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. During this absence, I decided I wanted to document this part of my life to help others who share this diagnosis.”

Dion added that she hopes the film will “raise awareness of this little-known condition”.

Stiff person syndrome is an autoimmune and neurological disorder that causes rigidity in the torso and limbs. Symptoms also include muscle spasms, which have affected Dion’s ability to sing and perform, and can be triggered by environmental stimuli (like loud noises) or emotional stress.

Celine Dion in Los Angeles in 2017 (Getty Images)

The new film’s official logline calls I Am: Céline Dion an “emotional, energetic and poetic love letter to music”. It is directed by Irene Taylor, who was Oscar-nominated in 2009 for her short documentary The Final Inch, about efforts to eradicate polio.

Last December, Dion’s older sister Claudette gave an update on the singer’s debilitating experiences with stiff person syndrome.

“She’s working hard, but she doesn’t have control over her muscles,” Claudette Dion told Canada’s 7 Jours. “What breaks my heart is that she’s always been disciplined. She’s always worked hard. Our mother always told her, ‘You’re going to do it well, you’re going to do it properly.’”

In May 2023, Dion was forced to cancel the remaining dates of her world tour. The Canadian musician said at the time she was “working really hard to build back my strength”.

She added: “I’m so sorry to disappoint all of you once again. It’s not fair to you to keep postponing the shows, and even though it breaks my heart, it’s best that we cancel everything now until I’m really ready to be back on stage again.”

A release date for the documentary is yet to be announced.

Find further information about Stiff Person Syndrome here.