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Celine Dion goes public with her private health struggles: What we've learned so far

Celine Dion is opening up about her life-altering neurological disorder ahead of the release of her documentary, "I Am: Celine Dion."

The film, set to premiere June 25 on Prime Video, details the Quebec pop superstar's struggle with stiff person syndrome, a progressive condition that causes muscle rigidity and painful spasms.

The 56-year-old singer revealed her diagnosis in December 2022, saying the rare illness prevented her from performing. All of her tour dates were cancelled in the months that followed.

She's returned to the spotlight in recent weeks to talk about her efforts to return to the stage. Here's a look at what's been shared so far.

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THERE ARE PANIC BUTTONS IN HER HOME

Dion says her 13-year-old twin sons, Nelson and Eddy, practice "crisis" drills at home, and there are "panic buttons" in the house in case of emergencies.

When she has an episode, she experiences intense physical pain and her body becomes so rigid that she may need help from her sons, she told People in a cover story published Wednesday.

To ensure the boys are prepared, Dion and her physical therapist practise a "crisis" scenario every couple of months.

"We have panic buttons in the house and they know how to put me on my side," she said.


SHE TOOK NEAR-LETHAL DOSES OF VALIUM

Dion says symptoms of her illness had persisted for years and, at one point, she was taking near-fatal doses of Valium in order to get through her shows.

In a sit-down interview with NBC's Hoda Kotb on Tuesday night, the singer said doctors prescribed her diazepam, sold under the brand name Valium, to deal with the spasms before she was diagnosed in 2022 with stiff person syndrome.

Dion says she began taking progressively higher doses in order to perform and built such a high tolerance that she was taking 90 milligrams a day at one point.

"90 milligrams of Valium can kill you. You can stop breathing at one point. The thing is that my body got used to it at 20 (milligrams) and 30 and 40, until it went up. And I needed that," she said.

"I did not know, honestly, that it could kill me."

Dion says she eventually weaned herself off the drug with the help of doctors because "it stopped working."


SHE VOWS TO RETURN TO THE STAGE

Dion says she has been working "very hard" to perform again, though it's too soon to say when that will be.

She told the May edition of "Vogue France" that she has an intense, five-day regimen of athletic, physical and vocal therapy.

“The way I see it, I have two choices. Either I train like an athlete and work super hard, or I switch off and it’s over, I stay at home, listen to my songs, stand in front of my mirror and sing to myself,” she told the magazine.

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

This report by The Canadian Press was first published June 12, 2024.

Alex Nino Gheciu, The Canadian Press