Celine Dion reveals she is suffering from ‘very rare’ and incurable stiff-person syndrome
Celine Dion has revealed she is suffering from stiff-person syndrome, an incurable and rare neurological disorder which causes muscle stiffness and spasms
The Canadian star gave details of her condition in an emotional video message to fans, saying she is suffering spasms “that affect every aspect” of her life, causing difficulty when she walks and preventing her from using her vocal chords properly.
Dion, known for her hit power ballads including Think Twice, Because You Loved Me, My Heart Will Go On, and It’s All Coming Back To Me Now, delayed a Las Vegas residency in 2021 and postponed tour dates earlier this year due to health issues.
Pic: AP
In her video message, the singer said she now has no choice but to postpone most of her European shows, originally planned to start in February 2023, until 2024. Some shows, including dates in Greece and Romania, have been cancelled altogether.
“As you know, I’ve always been an open book and I wasn’t ready to say anything before, but I’m ready now,” Dion said.
“I’ve been dealing with problems with my health for a long time and it’s been really difficult for me to face these challenges and to talk about everything that I’ve been going through.
“Recently I’ve been diagnosed with a very rare neurological disorder called stiff person syndrome, which effects something like one in a million people.
“While we are still learning about this rare condition we now know this is what’s been causing all of the spasms I’ve been having.
“Unfortunately these spasms affect every aspect of my daily life, sometimes causing difficulties when I walk and not allowing me to use my vocal chords to sing the way I’m used to.”
Dion appeared tearful during her message, which she recorded in English and French, telling fans that it “hurts” to say she will not be ready to restart her European tour, which included UK dates, in February, and that she misses performing.
‘All I know is singing… I miss you so much’
“I have a great team of doctors working alongside me to help me get better, and my precious children who are supporting me and giving me hope,” she said. “I’m working hard with my sports medicine therapist every day to build back my strength and my ability to perform again, but I have to admit it’s been a struggle.
“All I know is singing, it’s what I’ve done all my life and it’s what I love to do the most. I miss you so much, I miss seeing all of you, being on the stage, performing for you. I always give 100% when I do my shows but my condition is not allowing me to give you that right now.”
Dion said she has no choice but to concentrate on her health and is hopeful that she is “on the road to recovery”.
She finished by saying: “This is my focus and I’m doing everything that I can to recuperate. I want to thank you so much for your encouraging wishes of love and support on my social media. This means a lot to me. Take care of yourselves, be well. I love you guys so much. And I really hope I can see you again real soon.”
What is stiff-person syndrome?
According to the National Institute of Neurological Disorders and Stroke in the US, stiff-person syndrome (SPS) is a rare neurological disorder with features of an autoimmune disease.
On its website, the institute says that 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…
“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.”
It says the disease affects twice as many women as men and that “scientists don’t yet understand what causes SPS, but research indicates that it is the result of an autoimmune response gone awry in the brain and spinal cord”.
It’s easy to see why Anora, the film currently creating a lot of awards buzz, is being described as a modern day Pretty Woman.
It tells the story of a young woman, a sex worker, who ends up falling in love with a very rich man; this time round, he’s the son of a Russian oligarch.
But the similarities end there. More than 30 years on from Richard Gere and Julia Roberts’ famous Hollywood ending, Anora takes the sugar-coating away from the realities of sex work.
Mikey Madison stars as Anora. Pic: Neon/Augusta Quirk
It is one of those rare films that has already impressed critics – taking the biggest prize at this year’s Cannes Film Festival and now leading the nominations at the Gotham Awards – but will also appeal to a wider audience looking for something fun and smart, too.
It is the latest story from writer-director Sean Baker, a filmmaker who often focuses on marginalised people and has covered sex work in several of his previous works, from a retired porn star in Red Rocket to a transgender sex worker in Tangerine, and a character who solicits sex work online in The Florida Project.
Anora took home the biggest prize at the Cannes Film Festival earlier this year. Pic: Neon
The theme was never intentional, he tells Sky News, but after discovering more about the industry he realised he wanted to tell these stories.
“I never imagined me making five films in a row focused on sex work,” he says. “It just happened to be that when I started doing research on the first one, I met sex workers, became friends with sex workers, and discovered that there were a million stories to be told in that world. And each one can be individual and very different, being that there’s so many aspects of sex work, so one led to the next.
“I don’t know if it will continue, I’m not sure, it has to happen organically though – I’d never want it to be a shtick of mine, you know, I want it to be something I’m inspired to do and there has to be a reason behind it.”
Pic: Neon
‘The sex work community is amazing’
Mikey Madison, who plays the lead character Anora – or Ani for short – is now tipped for best actress nominations come awards season next year.
She says she immersed herself in the world of her character when preparing for the role.
“I think that I went into the research not with much knowledge about sex work, and so I was able to learn a lot and educate myself in a way that I don’t know I would have if it weren’t for this film,” she says. “I’m so grateful to have that experience because the sex work community is amazing and I’ve made so many incredible friends.”
But that wasn’t the only prep Madison had to do. She’s listed in the credits as helping to choreograph her character’s dances, and she also had to learn Russian – though admits she’s out of practise again now.
“My Duolingo app has been bothering me trying to get me back into it. I think I just haven’t had a chance to practise any of it, but on the last handful of days of shooting, I was able to listen to pretty full conversations and understand what they were talking about. And at this point, I think it’s gone, but maybe I’ll be able to redevelop it.”
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When Anora competed at Cannes in May it won the Palme d’Or, the top prize for the best feature film.
Baker says the win was far more than just a tick off his bucket list.
“I think it was the bucket list! I mean, that was it,” he says. “It’s been incredible, it really has been, and I really didn’t expect it – we were just so happy to be in competition at Cannes, and next thing you know we’re at the awards ceremony, and next thing you know I’m up on stage and George Lucas is handing me the Palme d’Or.”
“So, yeah, it’s life changing.”
Anora is out in cinemas in the UK today
GB News has been fined £100,000 for breaking impartiality rules over a programme featuring Rishi Sunak, Ofcom has said.
It comes after the media watchdog announced in May that the show called People’s Forum: The Prime Minister had breached broadcasting guidelines.
The programme featured then prime minister Mr Sunak answering questions from a studio audience and a presenter.
GB News chief executive Angelos Frangopoulos said the fine was a “direct attack on free speech and journalism in the United Kingdom”.
“We believe these sanctions are unnecessary, unfair and unlawful,” he added.
The hour-long show, which aired on 12 February, prompted 547 complaints to Ofcom.
The regulator found earlier this year that while featuring Mr Sunak was fine in principle, “due weight” should have been given to an “appropriately wide range of significant views” other than the Conservatives.
Pic: PA
Ofcom said Mr Sunak “had a mostly uncontested platform to promote the policies and performance of his government in a period preceding a UK general election,” which it recorded as a breach of impartiality rules.
The watchdog said “given the seriousness and repeated nature of this breach,” it had imposed a £100,000 financial penalty.
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GB News was also directed to “broadcast a statement of our findings against it, on a date and in a form determined by us”.
The TV channel is challenging the breach decision by judicial review and Ofcom will not enforce the sanction decision until those proceedings are concluded.
Keep up with all the latest news from the UK and around the world by following Sky News
Mr Frangopoulos insisted the show featuring Mr Sunak “was an important piece of public interest programming”, and that “appropriate steps” were taken to ensure due impartiality.
He added: “It was designed to allow members of the public to put their own questions directly to leading politicians.
“GB News chooses to be regulated and we understand our obligations under the Code.
“But, equally, Ofcom is obliged by law to uphold freedom of expression and apply its rules fairly and lawfully.”
Ofcom previously found GB News violated due impartiality rules in March over five programmes that featured Tory MPs as presenters.
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