I Am: Celine Dion documentary - What is a Stiff-Person Syndrome? Explained

I Am: Celine Dion is a documentary directed by Irene Taylor and released on Amazon Prime Video on June 25, 2024. It depicts a raw and real portrayal of singer Celine Dion's life as she readjusts to life after her diagnosis with Stiff-Person Syndrome, commonly referred to as SPS.

SPS is a rare neurological disorder in the central nervous system that causes rigidity and painful spasms in the limb muscles of the patient. The condition progressively worsens over time and, if left untreated, can lead to fatal consequences. I Am: Celine Dion is a sensitive attempt to show how the disorder affects someone in real time and how the singer is coping with the syndrome.

The official summary of the documentary reads:

"Serving as a love letter to her fans, Celine Dion highlights the music that has guided her life while also showcasing the resilience of the human spirit as she struggles with a life-altering illness."

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Everything to know about Celine Dion's neurological disorder in I Am: Celine Dion

Stiff-Person Syndrome, or SPS, is a rare neurological autoimmune disorder that causes muscle pain, rigidity and spasms.

To break down these terms, SPS prompts the nervous system to send ill-timed motor signals to the muscles, causing them to spasm or jerk uncontrollably. The syndrome also causes localised stiffness and rigidity in the limbs, making coordinated movements difficult.

While the triggering cause for SPS is unknown, the disorder manifests in certain ways, as listed below:

• Muscle spasms
• Rigidity and stiffness in the limb muscles, especially the lower limbs
• Posture changes, including inward curving of the lower back
• Dysfunction in walking and coordination
• Loss of reflexes to varying degrees

For I Am: Celine Dion, director Irene Taylor spoke about filming with the musician and what it was like to shoot intense footage when Dion had a seizure on camera. This is an excerpt from her interview for the New York Times:

"We didn’t cut away. There were moments where I was like, OK, this is really intense. I let it go two or three seconds more, and then I would cut. I wanted to go just far enough that it makes people think about their own experience and not to run away.

"There are uncomfortable aspects of being alive, and if cinematic storytelling can get us closer to tolerating that discomfort, I want to do that with my films."

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What is the life expectancy of a person suffering from Stiff-Person Syndrome?

A still from the documentary I Am: Celine Dion (via @celinedion / Instagram)

SPS is a rare medical condition that only affects one or two in a million. The onset of the disorder happens mostly between 40-60 years of age but can occur in younger people too.

SPS is an autoimmune dysfunction and shortens life expectancy. A patient with SPS can live up to 6-28 years after a diagnosis, depending on their lifestyle and the degree of degeneration the symptoms cause.

This process can be slowed down by medical involvement, immuno-booster medicines and physical therapy.

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I Am: Celine Dion is available to watch on Amazon Prime Video.