Celine Dion revealed she was diagnosed with stiff-person syndrome in 2022 (Picture: Getty)
Celine Dion has opened up about the devastating moment that she told her sons about her health issues, reassuring them that she wouldn’t ‘die’.
The My Heart Will Go On singer was diagnosed with stiff-person syndrome, a rare autoimmune movement disorder, in 2022, and has been focusing on her recovery ever since.
The condition affects the nervous system and is said to turn people into ‘human statues’, but there is currently no known cure.
In a new interview, the 56-year-old spoke candidly about how she informed her children, René-Charles, Nelson and Eddy – who she shares with late husband René Angélil – about her illness.
‘I barely could walk at one point, and I was missing very much living,’ she said, via People Magazine.
‘My kids started to notice. I was like, “Okay, they already lost a parent. I don’t want them to be scared.”
Celine shares three sons with late husband René Angélil (Picture: Instagram)
Her partner died in 2016 (Picture: Getty)
‘I let them know, ‘You lost your dad, [but] mom has a condition and it’s different. I’m not going to die. It’s something that I’m going to learn to live with.’
Celine married René – who served as her manager – in December, 1994, the year after they announced their engagement.
They went on to renew their vows in 2000, and welcomed their first child, René-Charles in 2001, before adding to their family with twins Eddy and Nelson in 2010.
René died in January, 2016, at the age of 73, following a battle with throat cancer.
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Celine had been battling various health issues over the years, before she received a diagnosis of stiff-person syndrome in August, 2022.
She went public with her condition in December of that year, after she was forced to cancel her tour shows.
It is an incredibly rare condition, and causes stiffness and spasms in muscles – symptoms also make it difficult to walk.
What is stiff-person syndrome?
Stiff-person syndrome (SPS) is a rare autoimmune movement disorder that affects the central nervous system (the brain and spinal cord).
SPS is characterised by fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to stimuli such as noise, touch, and emotional distress, which can set off muscle spasms. Stiff-person syndrome is extremely rare.
Only about one out of every one million people have been diagnosed with this syndrome. Twice as many women have stiff person syndrome as men. Symptoms can occur at any age but usually develop between ages 30 and 60.
The All By Myself musician is set to front an Amazon Prime Video documentary, I Am: Celine Dion, to take fans behind the scenes of her tough few years.
Ahead of the release on June 25, she shed light on her agonizing symptoms in a sit-down interview with Hoda Kotb on the Today show.
‘It’s like somebody is strangling you. It’s like someone is pushing your larynx pharynx backwards. It gets into a spasm,’ she told the host in a presenter.
‘It can also be in the abdominal, in the spine, in the ribs. If I point my feet, they will stay in it [a stuck position].
Celine vowed to return to the stage (Picture: Getty)
‘If I cook – because I love to cook – my fingers, my hands, will get in a position.
‘It’s cramping but it’s in a position where you can’t unlock them. I had broken ribs at one point because sometimes when it’s very severe, it can break some ribs as well.’
Introducing the teaser clip on the Today show, Hoda added that Celine is ‘on the fight of her life right now, and it’s on full display’.
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