Renowned vocalist Celine Dion courageously unveiled a poignant moment from her ongoing battle with stiff-person syndrome in a deeply personal scene featured within the newly released documentary, “I Am: Celine Dion,” now accessible on Prime Video.

In this vulnerable portrayal, the 56-year-old icon is depicted experiencing a severe spasm during a physical therapy session. Lying on her side atop a therapy table, Dion visibly struggles with overwhelming emotions, shedding tears and trembling as she confronts the intense pain wrought by this neurological condition.

Stiff-person syndrome, an exceedingly rare autoimmune and neurological disorder affecting only one or two individuals per million, has been an integral part of Dion’s life for the past 17 years. The condition manifests through symptoms such as stiffness in the torso and limbs, punctuated by episodes of incapacitating muscle spasms triggered by diverse stimuli like loud noises, physical contact, or emotional distress.

Dr. Jennifer Hankenson, an esteemed authority in autoimmune neurology affiliated with Yale Medicine, elucidated that stiff-person syndrome correlates with diminished levels of gamma-aminobutyric acid (GABA) in the brain. GABA plays a pivotal role in regulating anxiety, emotional responses, and muscular activity. Insufficient levels of GABA can precipitate severe spasms, culminating in excruciating discomfort and emotional distress for patients, including Dion.

The documentary captures a poignant moment where Dion’s physical therapist guides her through the spasm, offering solace and administering a benzodiazepine nasal spray to alleviate anxiety and mitigate muscle spasms. Despite the intensity of her ordeal, Dion exhibits remarkable fortitude, reassuring those present with a quiet declaration, “I’m OK,” amidst the tumultuous physical and emotional upheaval.

Director Irene Taylor recounted Dion’s impassioned plea upon viewing an early edit of the film, where she insisted on preserving the authenticity of this vulnerable moment. “Don’t cut down that scene,” Dion fervently implored Taylor, underscoring her unwavering resolve to illuminate the harsh realities of living with stiff-person syndrome.

Dr. Amanda Piquet, Dion’s attending physician and director of the autoimmune neurology program at the University of Colorado Anschutz Medical Campus, provided insights into the sequence depicted in the documentary. She explained that the spasm initially originated in Dion’s foot before rapidly engulfing her entire body. This prolonged spasm, exacerbated by anxiety and panic, vividly illustrates the capricious and debilitating nature of stiff-person syndrome.

While Dion’s episode isn’t classified as a seizure, it serves as a stark reminder of the distressing impact of this condition, wherein patients retain full awareness amidst the physical tumult. Dr. Hankenson, who reviewed the documentary, characterized Dion’s ordeal as an “extreme episode” capable of escalating into a protracted crisis necessitating urgent medical intervention, potentially leading to hospitalization.

In a candid reflection following the spasm, Dion candidly expressed her profound sense of humiliation and loss of control, sentiments resonating deeply with individuals enduring chronic health challenges. Her openness in sharing such intimate moments within the documentary has garnered acclaim from medical professionals like Dr. Hankenson, who believes Dion’s advocacy will catalyze broader awareness and support for ongoing research into stiff-person syndrome.

Despite the formidable challenges posed by her condition, Dion’s journey offers glimpses of hope and resilience. Dr. Hankenson noted that Dion’s experience underscores the potential for recovery and adaptation in managing stiff-person syndrome, offering inspiration to others confronting similar health battles to summon courage and pursue treatment avenues that enhance their quality of life.

By shining a spotlight on her personal struggle with stiff-person syndrome, Celine Dion not only amplifies awareness but also underscores the imperative of compassion, empathy, and sustained research in confronting rare neurological disorders. Her narrative stands as a beacon of strength and advocacy, extending hope and solidarity to individuals navigating their own arduous journeys with chronic illness.