Celine Dion has recently opened up about her battle with Stiff-Person Syndrome, a rare neurological disorder, in an exclusive interview with NBC’s Today Show. The Canadian singer, known for her powerful voice and emotional performances, revealed that she had been grappling with the condition for a long time before making it public in December 2022. Dion expressed that keeping her health issues a secret from her fans felt wrong, especially since they have been a significant part of her journey.
In a preview of the upcoming NBC primetime special, Dion shared with Hoda Kotb that the burden of hiding her condition had become unbearable. “I could not do this anymore,” she said, referring to the weight of not disclosing her struggles. Dion explained that she and her family were initially unsure of what was happening to her. “We did not know what was going on,” she admitted. During this period, she was also caring for her late husband, René Angélil, who was battling throat cancer. “I had to raise my kids. I had to hide. I had to try to be a hero,” Dion said, describing the immense pressure she felt.
The singer’s decision to go public with her diagnosis was driven by a desire to be honest with her fans. “Lying to the people that got me where I am today was unbearable,” she confessed. Dion’s transparency has been a relief for her, allowing her to focus on managing her condition and living her life more openly.
Stiff-Person Syndrome is a rare disorder characterized by severe muscle spasms and rigidity. Dion described the pain as feeling like “somebody is strangling you,” with spasms so intense that they have caused her to break ribs. The condition has significantly impacted her ability to perform, leading to the cancellation of her 2023 tour. Her sister revealed that Dion had “no control” over her muscles, making it impossible for her to continue with her scheduled performances.
Dion’s journey with Stiff-Person Syndrome will be documented in the upcoming film “I Am: Celine Dion,” set to debut on Prime Video on June 25. The documentary will provide an in-depth look at her struggles and how she is managing the disease. Dion first noticed symptoms in 2008, initially believing that everything would be fine. However, as the muscle spasms and stiffness in her hands and feet worsened, she realized that something more serious was happening.
In her interview with Kotb, Dion shared that the spasms have affected every aspect of her daily life, including her ability to sing. “It hurts me to tell you this today,” she said, acknowledging the impact on her career. Despite the challenges, Dion remains determined to fight the disease and return to the stage. She has been undergoing daily physical therapy and working with a team of medical professionals to manage her symptoms.
Stiff-Person Syndrome is a rare condition, affecting approximately 1 in a million people. It is often associated with other autoimmune diseases and can cause severe impairment if left untreated. The exact cause of the disorder is not fully understood, but it is believed to involve an autoimmune response in the brain and spinal cord. Treatment options include medications to alleviate muscle spasms, antianxiety drugs, and intravenous immunoglobulin therapy.
Dion’s openness about her condition has brought attention to the challenges faced by those living with Stiff-Person Syndrome. Her story highlights the importance of early diagnosis and proper management of the disease. Despite the difficulties, Dion remains hopeful and is working hard to regain her strength. “I want you all to know, I’m not giving up… and I can’t wait to see you again,” she said in a message to her fans.
The full interview with Celine Dion will air during a one-hour primetime special on NBC on June 11 at 10 p.m. ET. This will be her first broadcast interview since revealing her diagnosis, offering a candid look at her journey and the impact of Stiff-Person Syndrome on her life and career.
