Celine Dion has said she is ‘deeply grateful’ for the support from her family and fans as she opened up about her experience of stiff-person syndrome (SPS).
The Canadian singer, 55, marked the international awareness day of the rare neurological condition by sharing a photo of herself with her three sons to Instagram.
In the post, she sent words of encouragement to others living with the autoimmune disorder and revealed she is determined to one day get back on stage and ‘live as normal of a life as possible’.
In the picture, Dion could be smiling with her arms wrapped around two of her sons while the third sat in front of her as they all posed on a racing podium with trophies.
She is mother to René-Charles, 23, and twins Nelson and Eddy, 13, with her late manager and husband, René Angélil, who died in 2016.
‘Today the world recognizes International SPS Awareness Day,’ she wrote alongside the post.
‘As many of you know, in the fall of 2022, I was diagnosed with Stiff Person Syndrome (SPS).
‘Trying to overcome this autoimmune 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.
‘I am deeply grateful for the love and support from my kids, family, team and all of you!
‘I want to send my encouragement and support to all those around the world that have been affected by SPS. I want you to know you can do it! We can do it! Love Celine xx…’
The singing superstar, whose best known hits include My Heart Will Go On, Think Twice and It’s All Coming Back to Me Now, received a standing ovation when she made a rare public appearance at the Grammy Awards last month to present the album of the year prize.
She had previously made her first public appearance in over three years last November, taking in a hockey game with her family.
What is stiff-person syndrome?
Stiff-person syndrome (SPS) is a rare autoimmune movement disorder that affects the central nervous system (the brain and spinal cord).
SPS is characterised by fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to stimuli such as noise, touch, and emotional distress, which can set off muscle spasms. Stiff-person syndrome is extremely rare.
Only about one out of every one million people have been diagnosed with this syndrome. Twice as many women have stiff person syndrome as men. Symptoms can occur at any age but usually develop between ages 30 and 60.
Earlier this year it was announced a new Prime Video documentary is set to detail her battle with SPS and the lengths she has gone to to carry on performing.
I Am: Celine Dion, captured over more than a year by Oscar-nominated filmmaker Irene Taylor, promises to provide insight into a pivotal period in the star’s life.
Dion has sold more than 250 million albums during her 40-year career, earning five Grammys, two Oscars and the Billboard Music Award lifetime achievement Icon Award.
The singer has spoken about having muscle spasms as a result of SPS and in 2021 she cancelled her Las Vegas residency due to health concerns.
She revealed her diagnosis in December 2022 and cancelled her Courage World Tour.
The main symptoms of SPS are muscle stiffening and spasming. Periods of muscle spasming can be triggered by environmental stimuli like loud noises and can calm down once the stimulus has gone.
Some people with SPS have other autoimmune diseases such as type one diabetes, vitiligo and pernicious anaemia.
There is no cure for SPS, but there are ways for the disease to be treated, including through the use of muscle sedatives and relaxants.
Physical and occupational therapy is also a treatment route for people with SPS.
Stiff-person syndrome is often treated with immunoglobulin, a medicine made from plasma donations. You can donate plasma to the NHS in England in Birmingham, London and Reading by registering at www.blood.co.uk/plasma
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