Celine Dion shares raw snap from her emotional documentary (2024)

Celine Dion took to Instagram on Tuesday to announce the release date of her emotional new documentary, I Am: Celine Dion.

The hitmaker, 55, gives fans a behind-the-scenes look at her battle with incurable stiff-person syndrome while revealing the new documentary will be streaming globally on Prime Video onJune 25.

Celineannounced in December 2022 that she had been diagnosed with the syndrome - an extremely rare disorder that makes the muscles in the torso and limbs alternate between spasming and being rigid.

She revealed she would be stepping away from performing.

The new documentary - captured over more than a year of filming - follows the star as she battles to continue her normal life and career amid her diagnosis.

Celine Dion's team took to her official Instagram account on Tuesday to announce the release date of her emotional new documentary, I Am: Celine Dion.

The hitmaker, 55, gave fans a raw and honest behind-the-scenes look at her long battle with incurable stiff-person syndrome while revealing the new documentary will be streaming globally on Prime Video as of June 25th

The new documentary - captured over more than a year of filming - follows the star as she battles to continue her normal life and career amid her diagnosis.

The emotional behind-the-scenes snap showcases Celine embracing a natural look as she punches the air - signifying her vow to not let the life-altering illness define her.

She captioned it with: 'Get ready! @amazonmgmstudios announces release date to the highly anticipated documentary! I AM: CELINE DION will be streaming globally on @primevideo starting June 25.

'Directed by Academy Award nominee Irene Taylor, I AM: CELINE DION gives us a raw and honest behind-the-scenes look at the iconic superstar's struggle with a life-altering illness.

'Serving as a love letter to her fans, this inspirational documentary highlights the music that has guided her life while also showcasing the resilience of the human spirit. - Team Celine'.

It comes after Celine said in a statement earlier this year: 'This last couple of years has been such a challenge for me, the journey from discovering my condition to learning how to live with and manage it, but not to let it define me.

'As the road to resuming my performing career continues, I have realized how much I have missed it, of being able to see my fans.

'During this absence, 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.'

A synopsis read: 'From visiting her couture touring wardrobe and personal effects to spending time in the recording studio, the documentary captures a global megastar’s never-before-seen private life.

'An emotional, energetic, and poetic love letter to music, I Am: Celine Dion captures more than a year of filming as the legendary singer navigates her journey toward living an open and authentic life amidst illness.'

Celine announced in December 2022 that she had been diagnosed with stiff-person syndrome - an extremely rare disorder that makes the muscles in the torso and limbs alternate between spasming and being rigid (pictured 2023)

She also revealed to fans that she would be stepping away from performing while she works on her health (pictured 2015)

Amazon MGM has landed the worldwide rights to the documentary with the film set to stream on Prime Video.

Irene Taylor directed the documentary made by Sony Music Vision, Sony Music Entertainment Canada and Vermilion Films.

'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,' she said in an emotional video first announcing her condition.

Although she initially postponed her Courage World Tour until the spring of 2024, the Golden Globe winner decided to cancel it in May.

'Even though it breaks my heart, it’s best that we cancel everything now until I’m really ready to be back on stage again,' she told her loyal fans.

The determined artist appears to have kept her promise she made to keep working on her health. 'I want you all to know, I’m not giving up … and I can’t wait to see you again!' she said at the time.

Celine's sister recently revealed the singer hadlost control of her musclesdue to her condition.

'Celine is a fighter,' an insider told US Weekly.'She doesn’t have as much control over her muscles as she did before, but she’s working with doctors and physical therapists to get better.'

Amazon MGM has landed the worldwide rights to the documentary with the film that is set to stream on Prime Video soon

Celine's condition, which is progressive and incurable, causes the body to attack its own nerve cells and severely impacts mobility; (pictured 2019)

The source claimed, 'Celine has been taking time to focus on her health but plans to take the stage again once she is given the go-ahead by her medical team.'

A second person in the know backed up the comments.

'She’s staying positive and upbeat and doing her physical therapy every day,' the insider said.

'Getting back on stage in some form is her constant dream, even if she can no longer sing; she just wants to see those shining faces.'

Stiff-person syndrome is a 'rare autoimmune neurological disorder that most commonly causes muscle stiffness and painful spasms that come and go and can worsen over time,' according to John Hopkins Medicine.

STIFF-PERSON SYNDROME: INCURABLE NEUROLOGICAL CONDITION THAT LOCKS THE BODY

Stiff person syndrome is an extremely rare disorder that makes the muscles in the torso and limbs alternate between spasming and being rigid.

Estimates suggest it affects around 70 people in the UK and 330 in the US and remains little understood. Around twice as many women as men are hit with it.

The progressive disease sees patients' stiffness increase over time and can lead to them needing to use a wheelchair.

There tend to be three types of the syndrome:

  • Classical person man syndrome: When rigidity and spasms are around the back and stomach, and occasionally thighs and neck. It can cause back curvature over time.
  • Stiff limb syndrome: Spasms especially affect the legs and feet, occasionally causing them to become fixed in place. Hands can also be affected.
  • Jerking stiff person syndrome: The rarest, most aggressive form, which includes symptoms from both the others, and also affects the head and eyes.

Experts do not know exactly what is behind the disease.

But they believe it may be caused by an autoimmune reaction, when the body attacks its own nerve cells that control muscle movement.

Around 40 per cent of sufferers also have type 1 diabetes, another autoimmune disease. Type 1 diabetes is particularly associated with classical person syndrome.

Other autoimmune conditions likevitiligo, which causes white patches of skin, and pernicious anemia are likewise associated with it.

It is also more common in people with breast, lung, kidney, thyroid or colon cancer, as well as lymphomas, but researchers do not yet know why.

In stiff person syndrome, the immune system attacks a protein that helps makegamma-aminobutyric acid (GABA), which regulate motor neurons — the nerves that control movement.

Low levels of GABA cause the neurons to continuously fire when they are not supposed to, resulting in the spasms and rigidity.

What are its symptoms?

The main symptoms caused bystiff person syndrome are spasms and rigidity of the torso and limbs.

Spasms can be triggered by loud noises, with the condition also causing heightened sensitivity to sound.

Touch and emotional distress can also be felt more intensely as a result of the condition.

The spasms can be so severe they cause people to fall over or lead to difficulty walking and other disability.

Stress and anxiety are also usually higher in those with the condition, particularly because of the unpredictability of spasms.

The lack of GABA — which regulates anxiety — in their system also affects mental health.

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Celine Dion shares raw snap from her emotional documentary (2024)

FAQs

What celebrities have stiff person syndrome? ›

Céline Dion Is 'Learning to Live With' Stiff Person Syndrome

In 2022, Céline Dion revealed she was suffering from stiff-person syndrome, a rare neurological disorder that causes spasms and muscle stiffness.

What is the story of Celine Dion documentary? ›

"Directed by Academy Award nominee Irene Taylor, I AM: CELINE DION gives us a raw and honest behind-the-scenes look at the iconic superstar's struggle with a life-altering illness.

Who is Celine Dion's partner now? ›

How is Celine Dion doing? ›

Celine Dion shared she has stiff person syndrome in 2022

Dion revealed in December 2022 that she'd been diagnosed with stiff person syndrome and would be postponing tour dates due to the condition. In May 2023, she canceled her remaining tour due to the disorder and shared that she was still being treated for it.

What is life expectancy for stiff person syndrome? ›

Patients typically present with initial symptoms between 40 and 60 years, although the onset has been reported in patients who are younger than 40 years and older than 60 years. From symptom onset to death, the course of SPS can range from 6-28 years.

What triggers stiff person syndrome? ›

These can be triggered by environmental stimuli (like loud noises) or emotional stress. The muscle spasms can be so severe that they cause the person to fall down. The muscles gradually relax after the stimulus is gone. These symptoms can lead to difficulty walking and, over time, even greater disability.

Who found Celine Dion? ›

Born into a large family in Charlemagne, Quebec, Dion was discovered by her future manager and husband René Angélil, and emerged as a teen star in her home country with a series of French-language albums during the 1980s.

What does Celines' son do? ›

What movie is based on Celine Dion's life? ›

Céline (2008 film)

Who is Celine Dion's baby daddy? ›

To mark the special occasion, the "My Heart Will Go On" singer shared a rare photo of herself on Instagram with her three sons—René-Charles, 21, and 11-year-old twins Nelson and Eddy, whose dad was Dion's husband, late music producer René Angélil.

Where does Celine live now? ›

How many natural children does Celine Dion have? ›

Céline Dion welcomed three children with her late husband, René Angélil. Dion's eldest son, René-Charles Angélil, is 23 and attended the 2024 Grammys with her. The singer also has 13-year-old fraternal twin boys named Nelson and Eddy.

What is stiff-person syndrome that Celine Dion has? ›

Last year, Celine Dion revealed she was diagnosed with stiff-person syndrome, a rare neurological condition that causes muscular stiffness and spasms. In a new interview, Dion's sister Claudette told 7 Jours that the star's disorder had progressed and she can no longer control her muscles.

What happened to Celine Dion's funeral? ›

A GRIM hoax has sent "Celine Dion funeral" viral on social media. The singer has been open about her health struggles after revealing she had been diagnosed with a rare neurological condition.

How old was Celine when she married? ›

Dion met Angélil, who became her manager, when she was just 12 years old and married him when she was 26. She once confessed that he was the only man she'd ever kissed. The couple had three children together: René-Charles, 18, and 9-year-old twins, Nelson and Eddy.

Who has been diagnosed with stiff person syndrome? ›

Stiff person syndrome is a very rare condition that causes severe muscle stiffness and spasms in the back or limbs.

What singer was diagnosed with stiff? ›

An upcoming documentary will focus on Celine Dion's health. This summer, fans of the legendary singer will get a close-up look at her journey after she was diagnosed with stiff person syndrome. The film, titled "I Am: Celine Dion," will be available to stream on Prime Video starting June 25, 2024.

Who is the girl with stiff person syndrome? ›

That led to a new medical mystery: Ayli, now 14, began experiencing episodes of excruciating cramping where her hands and feet would freeze up in claw-like positions — symptoms of Stiff-Person Syndrome, (SPS) the rare neurological disease that Céline Dion suffers from.

What is the old name for stiff person syndrome? ›

This condition was formerly named stiff-man syndrome and is also known as Moersch-Woltman Syndrome. The current clinical classification of SPS includes: Classic SPS. Partial SPS variants.

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