Celine Dion received a standing ovation at the premiere of her new film I Am: Celine Dion, which screened in New York earlier this week.
Directed by Oscar-nominated filmmaker Irene Taylor, the documentary chronicles her battle with the rare neurological condition stiff-person syndrome.
In an emotional speech, the “My Heart Will Go On” star said: “I cannot believe how fortunate I am to have my fans in my life.
“Thank you to all of you for being part of my journey.
“This movie is my love letter to each of you. I hope to see you all again very, very soon.”
The 56-year-old added that her fans had been integral to her recovery, stating: “Your never-ending love and support over all these years has delivered me to this moment.”
One of the world’s most successful musicians, Dion announced in 2022 that she had been diagnosed with the condition, prompting her to cancel tour dates and a Las Vegas residency.
The new documentary shows the singer emotionally describing the impact the condition has had on her voice and attempting to sing.
“When I try to breathe, my lungs are fine; it’s what is in front of my lungs that’s so rigid, because of stiff-person syndrome,” she explains.
“I can’t use my voice yet,” she says, starting to cry. “Music… I miss it a lot. But also, the people. I miss them.”
The new documentary will air on Tuesday 25 June on Prime Video.
What is stiff-person syndrome?
According to the US-based National Institute of Neurological Disorders and Stroke (NINDS), SPS is a rare neurological disorder with features of an autoimmune disease.
Those who have it have a heightened sensitivity to noise, touch and emotional distress, which can set off spasms and falls.
NINDS says: “Abnormal postures, often hunched over and stiffened, are characteristic of the disorder. People with SPS can be too disabled to walk or move, or they are afraid to leave the house because street noises, such as the sound of a horn, can trigger spasms and falls.”
The disease is often misdiagnosed as Parkinson’s disease and is frequently associated with autoimmune conditions such as diabetes or thyroiditis.
Doctors don’t yet know what causes SPS, but research indicates that it is the result of an autoimmune response gone awry in the brain and spinal cord. It affects twice as many women as men.
The condition is incurable but treatable. Treatments can include muscle relaxants, pain relievers and anti-anxiety drugs.
A recent study funded by NINDS demonstrated the effectiveness of intravenous immunoglobulin (IVIg) treatment in reducing stiffness and lowering sensitivity to noise, touch, and stress in people with SPS.
What has Celine Dion said about it?
Dion described the condition as “very rare”, saying it affects about one in a million people. “While we are still learning about this rare condition, we now know this has what’s been causing all of the spasms that I have been having,” she said in an Instagram post in December.
The singer added that the spasms had affected “every aspect” of her daily life, including making it difficult to walk and sing in the way she is used to.
In a June 2024 interview, she revealed that she had taken life-threatening doses of diazepam to help ease her pain while performing.
In a TV interview with NBC, the star said she tried to hide her symptoms five years after they first appeared as her husband and manager, Rene Angelil, was diagnosed with cancer for a second time.
“I had to hide,” she said. “I had to try to be a hero. I became a nurse. I became his supporter. I had to protect my kids. Practise my passion. Feeling my body leaving me. Holding on to my own dreams. But do I have dreams, what is going on, I can’t sing.”
Angelil died in 2016, aged 59. Two days later, Dion’s older brother Daniel also died of cancer.
At this point, her symptoms worsened, so she started taking high doses of Valium to manage her pain.
“[That amount] of Valium can kill you,” she revealed. “I did not know honestly that it could kill me… you can stop breathing.
“And at one point, the thing is that my body got used to it… and I needed that, it was relaxing my hold body for what, for two weeks, for a month, OK the show must go on. Here we go, I’m fine.
“But you get used to it, it doesn’t work anymore,” she said.
