In the trailer for her documentary, I Am: Celine Dion, the singer reveals, 'I was diagnosed with a very rare neurological disorder and I wasn't ready to say anything before. But I'm ready now.'
The Amazon Prime documentary, which has since become the platform's most popular documentary of all time, sees the musical icon open up about her Stiff Person Syndrome diagnosis and the way it has impacted her life, and looks back at some of her career highlights from the past 36 years.
It was therefore a momentous occasion when Celine Dion performed at the 2024 Paris Olympics Opening Ceremony – from the second floor of the Eiffel Tower no less. It was Celine's first live performance since 2019 when she performed in London.
She has spoken openly about how difficult singing has become since her diagnosis – even describing it as though she's being 'strangled'. She previously told NBC, 'I'm going to go back on stage, even if I have to crawl. Even if I have to talk with my hands. I will.'
As soon as the 'My Heart Will Go On' singer was spotted in the French capital, fans were hopeful that she would fulfil her wish of returning to the stage.
Here’s everything to know about Celine Dion's illness, when she was diagnosed, her documentary and whether she will sing at the Olympics Opening Ceremony.
Celine Dion's performance at the Paris Olympics
Celine made her long-awaited return at the Paris Olympics Opening Ceremony. In the days leading up to her performance, she was seen around the city taking photos with fans outside her hotel, heading to rehearsals at the Accord Arena and peeping through the sun roof of her car to greet excited onlookers.
Celine sang 'L'Hymne à l'amour' by the French singer Édith Piaf to close the ceremony from the second floor of the Eiffel Tower.
When was Celine Dion last on stage?
She last appeared on stage at The Grammys earlier this year to present Taylor Swift with the Album of the Year Award. It was one of the her first public appearances since her older sister Claudette raised concerns about her health last December. Claudette said Celine was ‘working hard, but doesn’t have control over her muscles', adding, 'what breaks my heart is that she’s always been disciplined. She’s always worked hard'.
On stage Celine said, 'Thank you all. I love you right back. When I say that I’m happy to be here, I really mean it from my heart. Those who have been blessed enough to be here at the Grammy Awards must never take for granted the tremendous love and joy that music brings to our lives and to people all around the world.'
When did Celine Dion's documentary come out?
The documentary, titled I Am: Celine Dion, offers a 'snapshot of a pivotal time in the life and career of one of the most recognised, respected, and successful performers in pop music history'. Taking fans on a 'journey inside Celine's past and present', the documentary will delve into her battle with Stiff Person Syndrome.
Opening up about I Am: Celine Dion, the singer said, 'The last couple of years has been such a challenge for me, the journey from discovering my condition to learning how to live with it and manage it, but not to let it define me.'
'I decided I wanted to document this part of my life, to try to raise awareness of this little-known condition, to help others who share this diagnosis.'
For those wanting to watch, it is available to stream now on Prime Video.
Is there a trailer for Celine Dion's documentary?
Yes, there is! You can watch it below.
What illness does Celine Dion have?
In 2022, Celine revealed that she was suffering from a degenerative disorder, called Moersch-Woltman Syndrome. The disorder is more commonly referred to as ‘Stiff Person Syndrome,’ or SPS, referring to the stiffness and rigidity of the limbs.
Originally called Stiff Man Syndrome, the name was updated to reflect the fact that the disorder can affect people of any age and sex – with studies showing women twice as likely to develop the disorder as men.
The condition is so rare that it’s hard to know exactly how many people in the world suffer from it, but it’s thought to affect around one in a million people.
What happened to Celine Dion?
Although it’s not known exactly when Celine was diagnosed, worries over her health first rose back in 2021, after the star faced the difficult decision of cancelling her Las Vegas residency. In December 2022, Celine revealed that she had been diagnosed with Stiff Person Syndrome and would be postponing the rest of her tour dates.
There isn’t a specific cause for the disease, however stiff person syndrome affects twice as many women as men, and it sometimes occurs alongside other autoimmune disorders (such as thyroid disease, diabetes, and vitiligo.)
By May 2023, the star cancelled her remaining tour dates – sharing that she was still being treated for the disorder.
What is Stiff Person Syndrome?
According to the National Organisation of Rare Diseases, Stiff Person Syndrome is ‘a rare acquired neurological disorder that most often causes progressive muscle stiffness (rigidity) and repeated episodes of painful muscle spasms. Muscular rigidity often fluctuates (i.e., grows worse and then improves) and usually occurs along with the muscle spasm.’
It notes that things such as ‘sudden noise, light physical contact, or being exposed to cold’ can act as triggers.
There is no cure for Stiff Person Syndrome, although some symptoms can be kept under control with the use of certain medications, as well as physical, occupational and aqua therapy.
What has Celine Dion said about her health?
Celine opened up in 2022 about her diagnosis, telling fans, ‘We now know this is what’s been causing all of the spasms that I’ve been having. Unfortunately, these spams affect every aspect of my daily life, sometimes causing difficulties when I walk and not allowing me to use my vocal cords to sing the way I’m used to.’
‘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 seeing all of you, being on the stage performing for you. I always give a hundred percent when I do my shows, but my condition is not allowing me to give you that right now,’ she added.