Celine Dion shows life with stiff person syndrome in new documentary

Singer Céline Dion was diagnosed with stiff person syndrome in 2022.^[]The Grammy Award-winning artist shared the diagnosis with fans in a December 2022 Facebook video. Last month, Dion released a new documentary about her life, giving fans a closer look at how the condition has impacted her life.

The documentary, “I Am: Céline Dion,” was released on Amazon Prime Video on June 25, 2024. In its first week, the documentary was the fifth most-watched documentary across all streaming services, bringing in over 82 million views.^[] It also achieved a rare perfect score on Rotten Tomatoes.^[] 

In the documentary, Dion, 56, reveals that she began experiencing symptoms of stiff person syndrome 17 years ago. Early symptoms included difficulties during vocal warmups and hoarseness.^[] In later years, the singer’s voice would sometimes crack during performances. In the film, she reveals that she was using 80 to 90 milligrams of valium a day to manage her symptoms.

The documentary includes behind-the-scenes footage from Dion’s canceled 2021 Las Vegas residency. It also highlights Dion’s decades-long career, beginning with her 1988 Eurovision Song Contest win. 

An on-camera seizure 

In a notable and now much-discussed moment, the film captures the singer experiencing a seizure caused by her condition.^[] The scene occurs just after Dion leaves a recording studio, where she was working on music for the 2023 film “Love Again.” The star then heads to a physical therapy appointment, where she begins to feel spasms in her foot. Her body then visibly locks up as the painful episode is recorded. 

In response, Dion’s care team closely monitors her and administers a diazepam nasal spray. Later, the singer tells the camera, “Every time something like this happens, it makes you feel so embarrassed. I don’t know how to express it. You don’t like to not have control of yourself, you know?”

Documentary director, Irene Taylor, spoke to People about her decision to keep filming during Dion’s seizure, saying, “I kept filming because that is my mode of operating, and then I figured we would determine afterward whether to edit that into the film.”

Speaking to the Los Angeles Times, Taylor discussed showing Dion the footage during post-production: “[Dion] said, ‘I think this film will help me.’ Then she said, ‘Don’t cut down that scene.’”

Stiff person syndrome 

Stiff person syndrome is a disease of the central nervous system that leads to painful muscle contractions and rigidity. The disease is thought to be an autoimmune neurological disorder and might, in some cases, have genetic links. The rare disorder often co-occurs with more common autoimmune conditions, such as thyroiditis, vitiligo, and type 1 diabetes.^[] It’s estimated that only about one to two people per  million have stiff person syndrome.^[] 

The condition’s rarity can lead to initial misdiagnosis. 

“Stiff person syndrome is particularly challenging to diagnose and treat due to its rarity, the lack of known biomarkers to aid in diagnosis, and limited treatment modalities,” Laura Malmut, MD, says. 

People with the condition are frequently diagnosed with conditions such as Parkinson’s, fibromyalgia, or multiple sclerosis.^[] Additionally, painful spasms are often triggered by external stimulation, leading people with this condition to avoid crowds and other overwhelming situations. This can also result in mental health–related misdiagnoses, including anxiety and phobia. 

Dr. Malmut explains that stiff person syndrome can present differently across patients and that it might progress in unique ways, depending on the person and their specific condition. 

“[Stiff person syndrome] follows a variable course that can be difficult to predict. Variations of stiff person syndrome may present and progress differently from one another,” she says. “Delay to diagnosis and treatment is significantly related to increased disease severity. ”

Current treatments include anti-spasmodic options, such as Diazepam.^[]Antidepressants, immunotherapy, antiepileptics, and muscle relaxers are also sometimes used.^[][] In recent years, donor intravenous immunoglobulin (IVIG) treatment has also become an option.