Celine Dion's battle with incurable Stiff Person Syndrome and her fight to continue her career are chronicled in the new documentary “I Am: Celine Dion.”
The 55-year-old hitmaker announced in December 2022 that she had been diagnosed with stiff person syndrome – an extremely rare condition in which the muscles in the torso and limbs alternately spasm and stiffen. She announced that she was quitting performing.
The new documentary, filmed over more than a year, follows the star as she struggles to continue her normal life and career despite her diagnosis – promising that the illness “will not define” her as she vows to raise awareness of this.
Dion said in a statement: “The last few years have been a huge challenge for me, the journey from discovering my condition to learning to live with it and cope with it, but not letting it define me.”
“As the journey to resuming my recording career continues, I have realized how much I have missed being able to see my fans.”
Celine Dion's battle with incurable Stiff Person Syndrome and her fight to continue her career are chronicled in the new documentary “I Am: Celine Dion.”
The 55-year-old hitmaker announced in December 2022 that she had been diagnosed with stiff person syndrome and that she would be giving up performing (pictured in 2015).
“During this absence, I decided to document this part of my life to raise awareness of this little-known condition and to help others who share this diagnosis.”
A synopsis states: “From viewing her couture tour wardrobe and personal items to spending time in the recording studio, the documentary captures the unprecedented personal life of a global megastar.”
“An emotional, energetic and poetic love letter to music, I Am: Celine Dion captures more than a year of filming as the legendary singer navigates her journey toward living an open and authentic life in the midst of illness.”
Amazon MGM has secured worldwide rights to the documentary and the film is set to stream on Prime Video.
Irene Taylor directed the documentary from Sony Music Vision, Sony Music Entertainment Canada and Vermilion Films.
“I've been struggling with health issues for a long time and it's been really difficult for me to face those challenges and talk about everything I've been through,” she said in an emotional video announcing her condition for the first time .
Although she initially postponed her Courage World Tour until spring 2024, the Golden Globe winner decided to cancel it in May.
“Even though it breaks my heart, it's best we cancel everything until I'm really ready to be on stage again,” she told her loyal fans.
Sources say Celine is struggling to overcome her health battle
Amazon MGM has secured worldwide rights to the documentary and the film is set to stream on Prime Video
The determined artist appears to have kept her promise to continue working on her health. “I want you all to know that I'm not giving up… and I can't wait to see you again!” she said at the time.
Dion's sister recently revealed that the singer had lost control of her muscles due to her condition.
“Celine is a fighter,” an insider told US Weekly. “She doesn't have as much control over her muscles as before, but she is working with doctors and physical therapists to get better.”
The source claimed: “Celine has taken time to focus on her health but plans to return to the stage as soon as her medical team gives the green light.”
A second informed person confirms these claims.
“She remains positive and optimistic and does her physical therapy every day,” the insider said.
“It is her constant dream to get back on stage in some capacity, even if she can no longer sing; She just wants to see those smiling faces.'
Celine's condition, which is progressive and incurable, causes the body to attack its own nerve cells and severely impairs mobility; seen in 2019
According to John Hopkins Medicine, Stiff Person Syndrome is a “rare autoimmune neurological disorder that most commonly results in muscle stiffness and painful spasms that come and go and can worsen over time.”
The Grammy winner was last seen at a hockey game in Las Vegas with her twins Eddy and Nelson, 13, and her eldest son Charles-Rene, 22, watching the Montreal Canadiens lose to the Golden Knights.
Celine shared her sons with her late husband Rene Angelil.
“My boys and I had so much fun visiting the Montreal Canadiens after their hockey game with the Vegas Golden Knights in Las Vegas on Monday night,” the My Heart Will Go On singer wrote on November 1.
“You played so well, what a game!! Thanks for meeting us after the game, guys! That was unforgettable for all of us. Have a great season! – Celine xx…'
The Power of Love artist announced last December that she had been diagnosed with stiff person syndrome and was quitting performing.
STIFF PERSON SYNDROME: INcurable neurological disease that blocks the body
Stiff person syndrome is an extremely rare condition in which the muscles in the trunk and limbs alternately spasm and stiffen.
It is estimated to affect around 70 people in the UK and 330 people in the US and is still poorly understood. Around twice as many women as men are affected.
As the disease progresses, patients' stiffness increases over time and may require them to use a wheelchair.
There are generally three types of the syndrome:
- Classic Person-Man Syndrome: When stiffness and cramps occur in the back and stomach area and occasionally in the thighs and neck. Over time, a curvature of the back may occur.
- Stiff limb syndrome: Cramps primarily affect the legs and feet and occasionally lead to them cramping. Hands can also be affected.
- Jerking Stiff Person Syndrome: The rarest and most aggressive form, which includes symptoms of both others and also affects the head and eyes.
Experts don't know what exactly is behind the disease.
However, they believe the cause may be an autoimmune reaction, in which the body attacks its own nerve cells that control muscle movement.
Around 40 percent of those affected also suffer from type 1 diabetes, another autoimmune disease. Type 1 diabetes is particularly associated with classic person syndrome.
Other autoimmune diseases such as vitiligo, which causes white patches of skin, and pernicious anemia are also associated.
It is also more common in people with breast, lung, kidney, thyroid or colon cancer, as well as lymphoma, but researchers don't yet know why.
In stiff person syndrome, the immune system attacks a protein that helps make gamma-aminobutyric acid (GABA), which regulates motor neurons – the nerves that control movement.
Low GABA levels cause neurons to fire continuously when they shouldn't, leading to spasms and stiffness.
What are the symptoms?
The main symptoms of stiff person syndrome are spasms and stiffness of the trunk and limbs.
Cramps can be triggered by loud noises, and the condition also leads to increased sensitivity to noise.
Touch and emotional stress can also be felt more strongly due to the illness.
The cramps can be so severe that they cause you to fall over or cause difficulty walking and other disabilities.
Stress and anxiety also tend to be higher among sufferers, particularly due to the unpredictability of cramps.
The lack of GABA – which regulates anxiety – in their system also impacts mental health.