“No one knows how to fix it” - 'I am: Celine Dion' documentary reveals singer’s battle with rare disease

I Am: Celine Dion is a documentary film that chronicles the struggles of Celine Dion with stiff-person syndrome, a rare neurological disorder that causes muscle rigidity. This challenge with her health has made singing, her lifelong passion, increasingly difficult.

The documentary, now streaming on Prime Video, is directed by Irene Taylor. It offers a raw and honest look at Celine Dion's life, career, and health challenges. Using clips from her 40-year career and contemporary footage, I Am: Celine Dion shows the singer at her most vulnerable stage.

In an interview with the LA Times, Irene revealed how she was skeptical at first when she was approached to direct the documentary. However, she was later won over by Celine Dion's personality.

During the interview, Irene revealed while shooting for a particular scene, the singer said to her,

"I don't want to have a rare disease. No one knows how to fix it."

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I Am: Celine Dion - Exploring more details on the documentary

Directed by Irene Taylor, I Am: Celine Dion premiered in New York City on June 17, 2024, and was released theatrically four days later by Amazon MGM Studios. There was another presentation of the film last week at Lincoln Center, which Celine herself attended. During the presentation of the documentary, she said,

"This is by far the biggest crowd I've had in a few years. I cannot believe how fortunate I am to have my fans in my life. Thank you to all of you from the bottom of my heart for being a part of my journey. This movie is my love letter to each of you. I hope to see you all again very soon."

Celine Dion, who battles hard against stiff-person syndrome, is the focus of I am: Celine Dion, a 2024 American documentary film directed by Irene Taylor. The movie shows her early days in Quebec, where she was one of the youngest among fourteen children, and her rise to the global stage.

It highlights moments from her extensive career and new footage showing how she has dealt with her health problems. The film received rave reviews for its raw and honest portrayal of Dion's life and has become the number one movie on Amazon Prime Video worldwide.

The I am: Celine Dion documentary features Dion at one of her weakest moments, unveiling what stiff-person syndrome has done to her in terms of physical and emotional state. Homely scenes with family have been used in this work, revealing facial expressions without make-up and with casual clothes.

The film's emotional core lies within Dion's frankness about her condition and determination to keep engaging with fans despite personal challenges.

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What is the stiff person syndrome that Celine Dion was diagnosed with?

The rare autoimmune neurological disorder known as stiff person syndrome (SPS) manifests itself through muscle stiffness and painful spasms. Although starting usually from the legs or back, these symptoms can also occur in the stomach, upper torso, arms, neck, and face.

These contractions may be triggered by jerky movements, emotional stress, cold weather, or certain physical activities. SPS follows an uncertain etiology currently having no definite cure, but life quality improves upon symptom management help from specialists.

Most often, SPS occurs in people aged between 40 and 50; however, it can appear among children and older adults. This disorder affects one to two persons in a million but is now seen as a range of disorders, suggesting that it may be more common than previously believed.

The I Am: Celine Dion documentary shows the singer's struggle with how SPS has affected her voice. It also features vulnerable scenes where she says she does not want to have it because there is no cure.

Although there is no known cure for the disease, treatment options focus on managing symptoms and improving the quality of life.

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In I Am: Celine Dion, the singer's candidness about her struggle with SPS brings much-needed awareness to this little-known condition. The documentary is available for streaming on Amazon Prime Video.