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Documentary to detail Celine Dion’s battle with rare neurological condition

A new documentary will detail singer Celine Dion’s battle with the rare neurological condition Stiff Person Syndrome (SPS) and the lengths she has gone to to carry on performing.

I Am: Celine Dion, which has been acquired by Amazon Prime Video, promises to provide insight into a pivotal period in the star’s life.

Dion, 55, said: “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 realised how much I have missed it, of being able to see my fans.

The Metropolitan Museum of Art Costume Institute Benefit Gala – New York
Celine Dion (Aurore Marechal/PA)

“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.”

The documentary, captured over more than a year by Oscar-nominated filmmaker Irene Taylor, will allow fans to visit her couture touring wardrobe and personal effects and spend time with Dion in the recording studio.

It will be available to stream on Prime Video in more than 240 countries and territories worldwide at a later date to be announced.

Jennifer Salke, head of Amazon MGM Studios, said: “Celine Dion is a global megastar with a career defined not only by her extraordinary work ethic and passion, but by her dedication to her fans.

“This documentary is a raw, intimate portrayal of a pivotal time in her personal life and career, pulling back the curtain on her journey as she overcomes an unthinkable diagnosis. It’s an honour to be trusted with her story, and we can’t wait to share it with Prime Video audiences around the world.”

Celine Dion in concert – London
The star has had to cancel tour dates amid her health struggles (Yui Mok/PA)

Dion has sold more than 250 million albums during her 40-year career, earning five Grammys, two Oscars and the Billboard Music Award lifetime achievement Icon Award.

Among her best known hits are My Heart Will Go On, from the film Titanic, Think Twice, Because You Loved Me, It’s All Coming Back To Me Now, The Power Of Love and That’s The Way It Is.

Dion has spoken about having muscle spasms as a result of SPS and in 2021 she cancelled her Las Vegas residency due to health concerns.

She revealed her diagnosis in December 2022 and cancelled her Courage World Tour.

The main symptoms of SPS are muscle stiffening and spasming.

Periods of muscle spasming can be triggered by environmental stimuli like loud noises and can calm down once the stimulus has gone.

Some people with SPS have other autoimmune diseases such as type one diabetes, vitiligo and pernicious anaemia.

There is no cure for SPS, but there are ways for the disease to be treated, including through the use of muscle sedatives and relaxants.

Physical and occupational therapy is also a treatment route for people with SPS.