By Mawunyo Gbogbo, ABC News
Celine Dion performing in 2018. Photo: Yoshika Horita/supplied
Celine Dion felt burdened keeping her diagnosis with stiff person syndrome (SPS) to herself, saying she felt like she was lying to her fans.
In an exclusive interview with Today's Hoda Kotb on American network NBC, Dion opened up about what it was like keeping her health battles a secret.
"Lying for me was, the burden was like too much," Dion said. "Lying to the people who got me where I am today, I could not do it anymore."
The 56-year-old first shared her diagnosis with fans in December 2022, but her symptoms began 17 years ago.
It took a while, however, to figure out what she was dealing with.
"We did not know what was going on," Dion said.
Celine Dion speaks onstage during the 66th GRAMMY Awards at Crypto.com Arena on 4 February, 2024 in Los Angeles, California. Photo: KEVIN WINTER / Getty Images via AFP
"I did not take the time. I should have stopped… take the time to figure it out.
"My husband as well was fighting for his own life.
"I had to raise my kids. I had to hide. I had to try to be a hero."
The star says she didn't want to disappoint her fans during live shows and had to "lower the keys" with some of her songs because she sounded "nasal".
She was forced to cancel shows.
"It's been very difficult, very painful, challenging, scary."
Dion was speaking to Kotb ahead of her upcoming documentary I Am: Celine Dion being released. The doco is a behind-the-scenes look at her struggle with the life-altering illness and the music that has guided her through.
When asked what the illness took away from her, Dion was defiant.
"It didn't take anything away from me," she said.
"I'm going to go back on stage even if I have to crawl. Even if I have to talk with my hands, I will. I will.
"Today, my voice will be heard for the first time, not just because I have to, or because I need to. It's because I want to.
"And I miss it."
What is stiff person syndrome?
According to the Columbia University Irving Medical Center, stiff person syndrome is not what you think it is. We rely on our muscles all day, every day, and sometimes those muscles can rebel against us, according to Yale Medicine.
SPS is a progressive autoimmune and neurological disorder. Among the rarest of diseases, it affects fewer than 5000 people in the United States.
Spasms can be very strong and may cause you to fall if standing. They can sometimes be strong enough to break bones.
The spasms may be worse when you're anxious or upset. Sudden movements, loud noise, or touching can also trigger involuntary spasms.
If you're living with this condition, you're more prone to falls because of a lack of stability and reflexes. This can increase your risk for severe injuries and even permanent disability.
What are the symptoms?
Symptoms can vary depending on the type of SPS you have. But they can include:
- limb stiffness
- stiff muscles in the trunk (torso), arms and legs
- posture problems from rigid back muscles that can cause you to hunch over
- painful muscle spasms
- walking difficulties
- sensory issues such as sensitivity to light, noise, and sound.
Who does it affect?
Stiff person syndrome is twice as common in women than it is in men.
It is frequently associated with other autoimmune diseases such as type-I diabetes, thyroiditis, vitiligo, and pernicious anaemia.
Scientists don't yet understand what causes SPS, but research indicates that it is the result of an autoimmune response gone awry in the brain and spinal cord.
What is the cause?
The cause is unknown, but researchers suspect it may be the result of an autoimmune reaction where the body attacks nerve cells in the central nervous system that control muscle movement.
It is often misdiagnosed, so how do you know you have it?
Reaching a diagnosis can be difficult. Stiff person syndrome is often misdiagnosed as Parkinson's disease, multiple sclerosis, fibromyalgia, psychosomatic illness, or anxiety and phobia. A definitive diagnosis can be made with a blood test that measures the level of glutamic acid decarboxylase (GAD) antibodies.
Is there a cure?
No. But there are treatments available to manage symptoms.
How is it treated?
Symptoms can be kept under control with medication such as:
- muscle relaxers such as baclofen
- benzodiazepines such as diazepam (Valium) or clonazepam (Klonopin)
- anti-seizure medications like gabapentin (Neurontin)
- anticonvulsants such as pregabalin (Lyrica).
Additional treatments have been shown to help prevent the disease process including:
- intravenous immunoglobulin
- plasmapheresis
- immune-suppressing drugs
- autologous stem cell transplant.
Exercise and physical therapy can help with:
- emotional well-being
- walking
- independence
- pain
- posture
- overall day-to-day function
- range of motion.
I Am: Celine Dion will be available to stream on Prime Video from 25 June.
- ABC