FIRST LOOK! Celine Dion shares raw behind-the-scenes footage from her emotional new documentary discussing her battle with incurable Stiff Person Syndrome

By James Last updated Apr 16, 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 as she reveals the new documentary will be streamed globally on Prime Video on June 25.

Celine announced in December 2022 that she had been diagnosed with the syndrome – an extremely rare condition that causes muscles in the torso and limbs to alternate between spasm and stiffness.

She revealed that she wanted to step away from acting.

The new documentary – shot over more than a year of footage – follows the star as she struggles 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 streamed globally on Prime Video from June 25

The new documentary – shot over more than a year of footage – follows the star as she struggles to continue her normal life and career amid her diagnosis.

The emotional behind-the-scenes shot shows Celine embracing a natural look as she punches the air – indicating her vow not to let the life-changing disease define her.

She captioned it: ‘Get ready! @amazonmgmstudios announces release date for highly anticipated documentary! I AM: CELINE DION will stream globally on @primevideo from June 25th.

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 battle with a life-changing illness.

‘Serving as a love letter to her fans, this inspiring documentary highlights the music that has guided her life while showcasing the resilience of the human spirit. – Team Celine’.

It comes after Celine said in a statement earlier this year: “The last few years have been such a challenge for me, the journey from discovering my condition to learning to live with and manage it but not let it define me.

‘As the road to resuming my performing career continues, I’ve realized how much I’ve missed seeing my fans.

“During this absence, I decided that 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 wardrobe and personal effects to spending time in the recording studio, the documentary captures the never-before-seen private life of a global megastar.

‘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 towards living an open and authentic life in the midst of illness.’

Celine announced in December 2022 that she had been diagnosed with stiff-person syndrome – an extremely rare disorder that causes muscles in the torso and limbs to alternate between spasm and stiffness (pictured 2023)

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

Amazon MGM has acquired 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 issues with my health for a long time and it’s been really hard for me to face these challenges and to talk about everything I’ve been through,’ she said in an emotional video that first announced her condition. .

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

“Although it breaks my heart, it’s best that we cancel everything now until I’m really ready to get back on stage again,” she told her loyal fans.

The determined artist seems to have kept his promise to keep working on his health. “I want you all to know I’m not giving up…and I can’t wait to see you again!” she said then.

Celine’s sister recently revealed that the singer had lost control of her muscles due to her condition.

“Celine is a fighter,” an insider shared US Weekly. ‘She doesn’t have as much control over her muscles as she did before, but she is working with doctors and physios to get better.’

Amazon MGM has acquired the worldwide rights to the documentary with the film soon to be streamed on Prime Video

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

The source claimed, “Celine has taken time off to focus on her health, but plans to hit the stage again once she gets the green light from her medical team.”

Someone else in the know backs up the comments.

“She remains positive and upbeat and is doing her physical therapy every day,” the insider said.

‘Getting back on stage in some form is her constant dream, even though she can no longer sing; she just wants to see the shiny faces.’

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

STIFF PERSON SYNDROME: Incurable neurological condition that locks up the body

Stiff person syndrome is an extremely rare condition that causes the muscles in the torso and limbs to alternate between spasm and stiffness.

Estimates suggest it affects around 70 people in the UK and 330 in the US, and it is still poorly understood. About twice as many women as men are affected by it.

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

There are usually three types of the syndrome:

Classic person man syndrome: When stiffness and spasms are about the back and abdomen, and occasionally thighs and neck. It can cause back curvature over time.
Stiff limb syndrome: Spasms particularly 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 movements.

About 40 percent of patients also have type 1 diabetes, another autoimmune disease. Type 1 diabetes is particularly associated with classic personality syndrome.

Other autoimmune conditions such as vitiligo, which causes white patches on the skin, and pernicious anemia are also 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 make gamma-aminobutyric acid (GABA), which regulates motor neurons – the nerves that control movement.

Low levels of GABA cause neurons to continuously fire when they shouldn’t, resulting in spasms and stiffness.

What are its symptoms?

The main symptoms caused by stiff person syndrome are spasms and stiffness of the torso and limbs.

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

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

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

Stress and anxiety are also usually higher in those with the condition, especially due to the unpredictability of the spasms.

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