Nearly a year and a half since Celine Dion shared her diagnosis of stiff-person syndrome, we have a rare update on the singer’s condition.
“Trying to overcome this auto-immune disorder has been one of the hardest experiences of my life, but I remain determined to one day get back onto the stage and to live as normal of a life as possible,” the 55 year-old shared on Instagram on Friday.
“I am deeply grateful for the love and support from my kids, family, team and all of you!”
The star posted the update alongside a photo of her children, son René-Charles Angélil, 23, and 13-year-old twins Eddy and Nelson.
Celine made the post in honour of Stiff Person Syndrome Awareness Day, which is March 15.
“I want to send my encouragement and support to all those around the world that have been affected by SPS,” she added. “I want you to know you can do it! We can do it! “Love Celine xx.”
The previous update came back in December 2023, when Celine’s sister, Claudette Dion, shared with 7 Jours that Celine no longer “[had] control over her muscles.”
She continued, “What breaks my heart is that she’s always been disciplined. She’s always worked hard. Our mother always told her, ‘You’re going to do it well, you’re going to do it properly.”
“It’s true that in both our dreams and hers, the goal is to return to the stage. In what capacity? I don’t know.”
Celine Dion bravely shared her diagnosis of a rare and incurable neurological disorder, Stiff Person Syndrome, in a teary social media post in late 2022.
“I’ve been dealing with problems with my health for a long time, and it’s been really difficult to face these challenges and to talk about everything that I’ve been going through,” the multi-platinum award winner said in a short video.
“Recently I have been diagnosed with a very rare neurological disorder, Stiff Person Syndrome which affects something like one in a million people,” she added.
According to the National Center for Advancing Translational Sciences, Stiff Person Syndrome impacts fewer than 5,000 in the United States.
Dion was forced to cancel her upcoming tour as a result of her health.
“I’m sorry it’s taken me so long to reach out to you, I can’t wait to be on stage talking to you in person. As you know I’ve always been an open book and I wasn’t ready to say anything before but I’m ready now,” she said.
“It hurts me to tell you today, this means I won’t be ready to restart my tour. I have a great team of doctors working alongside me to help me get better.”
Read on below for everything you need to know about Stiff Person Syndrome, including what Celine Dion has said about her diagnosis.
What Is Stiff Person Syndrome?
According to the Stiff Person Syndrome Foundation, the condition is “a neurological disease with autoimmune features”.
Due to its rarity, many people are misdiagnosed with other chronic illnesses like Fibromyalgia, Multiple Sclerosis and Parkinson’s.
“Symptoms include muscle spasms, hyper-rigidity, debilitating pain, and chronic anxiety,” the foundation also said.
“Muscle spasms can be so violent they can dislocate joints and even break bones,” they explained.
The main symptom is Stiff Person Syndrome is muscle spasms, which are “ highly variable in their severity and rate of worsening”.
These spasms and stiffness impact mobility, which in turn could contribute to increased anxiety levels and depression.
According to the National Institute of Health, Stiff Person Syndrome can also cause exaggerated startle response, which is an “exaggerated startle reaction in response to a sudden unexpected visual or acoustic stimulus”.
Many people living with this condition also develop a fear of public places as loud noises can trigger spasms and falls.
Is There A Cure For Stiff Person Syndrome?
There is no cure for Stiff Person Syndrome, but is rather a disease that is treated by alleviating symptoms.
As per the Stiff Person Syndrome Foundation, “medications and other treatments may help reduce stiffness, muscle spasms and pain in some individuals”.
“Unfortunately, though, most patients with SPS still have at least some degree of disability,” they added.
What Has Celine Dion Said About Being Diagnosed With Stiff Person Syndrome?
Celine Dion delivered a powerful, apologetic statement to her fans explaining how her symptoms affect her daily life, what it’s like living with the condition and why she’s had to cancel her upcoming tour.
“We are still learning about the rare condition, we now know that this is what has been causing all of the spasms that I’ve been having. Unfortunately these spasms affect every aspect of my daily life,” Dion revealed.
The star also added that the disease causes difficulties when she walks and disables her from using her vocal cords impacting how she sings. “I can’t sing the way I’m used to,” she explained to fans. “I have to admit it’s been a struggle. All I know is singing, it’s what I’ve done all my life and it’s what I love to do the most. I miss you so much.
“I have hope that I’m on the road to recovery, this is my focus and I’m doing everything that I can to recuperate.”
Since sharing her diagnosis, an outpouring of love and support has been directed at the star, including Gwen Stafani, Jacquemus founder and designer Simon Porte Jacquemus and fashion influencer Camille Charriere.
Dion also added that believes she will be back on stage performing for her fans soon.
In September 2023, her sister Claudette Dion elaborated on the illness to HELLO! Canada.
“It’s an illness we know so little about,” Claudette explained.
“There are spasms – they’re impossible to control. You know who people often jump up in the night because of a cramp in the leg or the calf? It’s a bit like that, but in all muscles,” she added. “There’s little we can do to support her, to alleviate her pain.”
Given the severe impact on Celine’s wellbeing and quality of life, her sister is praying for a miracle cure to the condition, saying “we’re crossing our fingers that researchers will find a remedy for this awful illness.”
