Prior to her highly anticipated return to the stage, a documentary was released detailing her battle with stiff person syndrome. Named “I Am: Céline Dion,” the film, which debuted on Prime Video in June, offers an intimate glimpse into Dion’s journey towards performing again. The singer also frequently shares insights into her life with stiff person syndrome on her Instagram account.
Here is an overview of what the singer has disclosed about her health and her efforts to make a comeback to the stage.
How is Céline Dion’s health progressing?
Speaking with BBC in June 2024, Dion expressed her determination to rebuild her voice, a process already underway. She emphasized her commitment to performing again, a promise she fulfilled at the opening ceremony of the 2024 Paris Olympics by singing “L’Hymne à L’Amour” by Edith Piaf.
In mid-June, Dion graced the premiere of her documentary in New York City, exuding joy as she interacted with the audience for the first time in years.
During a TV interview aired in mid-June 2024, she spoke with TODAY’s Hoda Kotb about the strengthening of her voice and her optimism about returning to the stage in the near future. Despite acknowledging potential setbacks, Dion asserted her resolve not to let her condition dictate her life.
Dr. Amanda Piquet, Dion’s physician, noted significant progress in her treatment since the documentary was filmed. Dion herself has expressed newfound happiness since openly discussing her diagnosis, highlighting the relief of unburdening herself and focusing on the present.
Managing her illness through various therapies, Dion has been dedicating herself to recovery and embracing her journey towards resuming her performing career. This positive outlook was evident when she received a warm reception at the 2024 Grammys and expressed gratitude for being able to attend the event.
In a statement announcing her documentary earlier in 2024, Dion’s team emphasized her determination to overcome her health challenges and not let them define her.
What is stiff person syndrome?
Stiff person syndrome is a progressive neurological disorder displaying autoimmune characteristics, leading to muscle stiffness and spasms.
Stiff person syndrome is a rare neurological condition characterized by stiffness in the torso and limbs, increased sensitivity to noise, touch, and emotional stress, and painful muscle spasms. This disorder can significantly impact a person’s quality of life, leading to difficulties in posture, movement, and balance.
Individuals with stiff person syndrome may experience challenges in walking and are at higher risk of falling due to impaired muscle reflexes. The condition is uncommon, affecting only one or two individuals per million, with a higher prevalence among women than men.
Medical experts emphasize the seriousness of stiff person syndrome, noting its potential to impair movement and daily activities. Muscles involved in activities like singing, as seen in the case of Dion, are particularly vulnerable to spasms, affecting performance and overall quality of life.
Diagnosis of stiff person syndrome can be challenging due to its rarity and similarity to other conditions, often taking an average of seven years to confirm. While there is no cure for the syndrome, symptoms can be managed with medications, therapy, and lifestyle modifications.
The symptoms of stiff person syndrome typically start with aching, stiffness, and pain in the lower back, legs, shoulders, neck, and hips. Over time, the condition progresses to stiffening of leg muscles, leading to a distinct walking gait and posture. Muscle spasms triggered by certain sounds or stressors can cause individuals to freeze and fall unexpectedly.
The exact cause of stiff person syndrome remains unknown, but it is believed to involve an autoimmune response affecting the brain and spinal cord. The disorder is often linked to other autoimmune conditions like diabetes and thyroiditis.
Treatment for stiff person syndrome focuses on symptom management, with approaches such as IVIG therapy being utilized in cases like Dion’s to help alleviate symptoms and improve quality of life. Early recognition and proper management are essential in providing support and care for individuals living with this challenging condition.
Assistance in managing the autoimmune aspects of the condition is provided through various treatments. This includes seeing a vocal therapist and physical therapists, as well as taking medication. During a conversation with Hoda, it was revealed that high doses of Valium were relied upon to control muscle spasms. Treatment for stiff person syndrome typically consists of immune treatment, such as IVIG, and symptom-focused treatment, including medication like muscle relaxers and different physical therapies.
Celine Dion disclosed her diagnosis of stiff person syndrome in December 2022, leading to the postponement and eventual cancellation of tour dates. In an emotional Instagram video, she shared how the condition affected her daily life, causing difficulties in walking and singing. Despite the challenges, she expressed determination to regain her strength and ability to perform. Dion returned to the stage for the first time at the Paris Olympics 2024 opening ceremony and expressed her desire to continue performing, even if it means adapting her approach.
While there is no specific timeline for her return to touring, Dion remains optimistic about overcoming the obstacles presented by stiff person syndrome. Each individual’s experience with the condition varies, with some managing symptoms effectively to lead active lives. The journey of coping with the condition has been marked by ups and downs for Dion, dating back to when she first noticed symptoms during her 2008 tour in Germany. Despite the challenges, she remains resilient and focused on her passion for singing.
On a recent day, she began to feel muscle spasms, balance problems, and difficulty walking. Describing the sensation, she shared with Hoda, “It feels as though my feet are stuck in a certain position, or when I’m cooking – which I love to do – my fingers and hands lock up.” She went on to explain, “My feet cramp up, but it’s like they are stuck in a position that I cannot release.” She also mentioned, “During severe episodes, it can even result in broken ribs.”
In 2019, Dion turned to Valium to manage her undiagnosed muscle spasms. She disclosed that she relied on high doses of diazepam, commonly known as Valium, to ease tension in her body and enable her to perform despite struggling with muscle spasms, which had not yet been identified as stiff person syndrome. Recalling her experience, she admitted, “I didn’t realize it could be harmful. Before a performance, I used to take 20 milligrams of Valium, and by the time I walked from my dressing room to backstage, it had worn off.” She recounted how her tolerance grew, leading her to escalate to 90 milligrams daily, a potentially lethal amount. Eventually, with medical guidance, she successfully tapered off the medication during the pandemic.
In 2020, Dion embarked on a quest for answers regarding her health issues. For years, she grappled with unexplained symptoms while also caring for her late husband, who battled throat cancer until his passing in 2016. Reflecting on this period, she revealed, “We were clueless. I neglected to pause and investigate. I was preoccupied with looking after my kids and pretending to be strong.” When the pandemic struck, she proactively sought a diagnosis, remarking, “Odd as it may sound, I felt relief upon receiving my diagnosis. Finally, I could go with the flow instead of fighting against it.”
In January 2022, Dion postponed the commencement of her Las Vegas residency due to persistent muscle spasms hindering her ability to perform. Subsequently, she canceled the remaining shows in the North American segment of her world tour, citing ongoing recovery issues. As challenges persisted, she made the difficult decision to once again postpone her world tour in April 2022, expressing regret over the necessity of altering tour plans due to health concerns.
In December 2022, Dion made a public announcement disclosing her diagnosis of stiff person syndrome via an Instagram video. Alongside this revelation, she rescheduled her spring 2023 shows for 2024 and canceled several summer 2023 performances. Explaining her decision to share this personal news, she confided, “I couldn’t bear to stay hidden away any longer… the weight was unbearable. I realized, ‘I need to come out of seclusion.'”
I must do everything necessary to give my best performance. However, it is also important for me to inform the public about what is going on in my life. In 2023, Dion made the difficult decision to officially cancel the remaining dates of her world tour due to health issues. The announcement was made on May 26, 2023, emphasizing the singer’s commitment to prioritizing her well-being. In a heartfelt statement, Dion expressed her regret for disappointing her fans once again but assured them that she was diligently working on regaining her strength. Despite her dedication, she acknowledged the challenges of touring, especially when dealing with health concerns. With a heavy heart, Dion decided it was best to cancel all upcoming shows until she felt fully prepared to return to the stage. She conveyed to her supporters that she was not giving up and looked forward to reuniting with them in the future.
Moving forward to April 2024, Dion opened up about her treatment for stiff person syndrome in an interview with Vogue France. She detailed the rigorous therapy regimen she underwent, which included sessions five days a week targeting various parts of her body and voice. Dion shared her determination to give her all in the healing process, likening her commitment to that of an athlete training intensely. Her focus on holistic treatment and collaboration with a medical team reflected her unwavering dedication to achieving optimal health. Her ultimate aspiration was to revisit the iconic Eiffel Tower, symbolizing her resilience and determination to overcome her health challenges.
In June 2024, Dion granted a candid broadcast interview discussing her journey with stiff person syndrome. From recounting her initial symptoms to describing her efforts to return to performing, she provided an intimate look into her experiences. The extensive coverage aired on June 11 as a primetime special, offering viewers insight into Dion’s personal struggles and triumphs. Additionally, a documentary shedding light on her journey was released on Prime Video on June 25, further documenting her resilience and perseverance in the face of adversity.
Finally, in July 2024, Dion made a triumphant return to the stage, marking her first live performance since 2020. The emotional moment took place at the Paris Olympics opening ceremony, where Dion delivered a moving rendition of Edith Piaf’s classic “L’Hymne à L’Amour” from the iconic Eiffel Tower. The song’s history added depth to the performance, as it was originally released in 1950 following Piaf’s tragic loss of her lover in a plane crash. Dion’s return to performing showcased her strength and artistry, captivating audiences with her powerful vocals and poignant delivery. This article originally appeared on TODAY.com, chronicling Dion’s journey of resilience, recovery, and the enduring power of music.
