Skip to main content

As she battles rare disease, Celine Dion shares what gives her strength


Canadian pop superstar Celine Dion says living with a painful rare disease is a battle, though she doesn't feel alone.

In an interview on Monday at the premiere for the Prime Video documentary “I Am: Celine Dion” in New York City, Etalk senior correspondent Lainey Lui asked Dion what gives her strength not to give up as she copes with stiff person syndrome.

"The mother in me," she said, appearing to be close to tears. Dion has three sons: René-Charles Angélil, 23, and 13-year-old twin sons, Nelson and Eddy, with her late husband René Angélil. Angélil died of cancer in 2016. "It was a battle but I was not alone, and my family has been with me and my kids and wonderful doctors and all the fans."

The 56-year-old singer, who was born near Montreal, in Charlemagne, Québec, publicly shared her diagnosis in December 2022. She cancelled all her tour dates following the revelation. The progressive disease affects the brain and spinal cord, according to the National Institute of Neurological Disorders and Stroke. It can cause painful spasms and muscle rigidity, among other symptoms.

Dion said the condition prevents her from being able to "sing the way I’m used to," but that the documentary, which chronicles her journey with the neurological disorder, has helped take some weight off her shoulders. It will stream globally on Prime Video on June 25.

"This documentary…it gave me so much deliverance," she told Etalk on Monday.

'Love letter' to fans

CNN reported that Dion expressed gratitude to her neurologist, Dr. Amanda Piquet, during a speech before the documentary screening.

"In finding ways to manage and treat my condition, Dr. Piquet has delivered a very, very important result for me: She has replaced my fear with hope,” Dion told a cheering crowd at the event Monday.

Dion also thanked her fans for being part of her journey.

“This movie is a love letter to each of you, and I hope to see you all again very soon,” she said in her speech.

Her fans have done more to support her than any artist could hope for, she added in the interview with Etalk.

Comeback plans

With her return to the spotlight, Dion has vowed to make a comeback, determined to perform for her fans again.

According to The Canadian Press, she said in an interview published in the May edition of Vogue France that she is working "very hard" to return to the stage, but that she didn't know when that would happen. She revealed she does athletic, physical and vocal therapy five days a week.

"I've chosen to work with all my body and soul, from head to toe, with a medical team," she told the magazine. "I want to be the best I can be.”

With files from The Canadian Press and CNN Top Stories

Local Spotlight