‘I’ve always been an open book and I wasn’t ready to say anything before but I’m ready now’
Celine Dion has revealed that she has been diagnosed with Stiff Person Syndrome (SPS), which causes her muscles to tense uncontrollably and is “causing difficulties when I walk and not allowing me to use my vocal chords to sing”.
The condition leaves sufferers as “human statues” as it progressively locks the body into rigid positions, ultimately leaving people unable to walk or talk.
While there is no cure, there are treatments that slow down the progression, with Celine revealing she is doing all she can to minimise symptoms.
The 54-year-old singer made the announcement on Instagram on Thursday, as she cancelled her European tour in February.
Celine told fans that she has always been an “open book and I wasn’t ready to say anything before but I’m ready now”.
https://www.instagram.com/p/Cl5x5rIgzcX/
She continued: “I’ve been dealing with problems with my health for a long time and its been really difficult for me to face my challenges and to talk about everything that I’ve been going through.
“Recently I’ve been diagnosed with a very rare neurological disorder called the stiff person syndrome which affects 1 in a million people.
“While we’re still learning about this rare condition, we now know this is what’s been causing all the spasms I’ve been having.”
Celine said the spasms “affect every aspect of my daily life sometimes causing difficulties when I walk and not allowing me to use my vocal chords to sing the way I’m used to”.
She reassured fans that she had a team of “great doctors working alongside” her, and is being supported by her “precious” children, but won’t be ready to restart my tour in Europe in February.
“I’m working hard with my sports medicine therapist every day to build back my strength and my ability to perform again but 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 miss seeing all of you being on the stage performing for you. ‘I always give 100 percent when I do my show but my condition is now allowing me to give you that right now.”
Celine said, in order to reach her fans again, “I have no choice but to concentrate on my health at this moment and I have hope that I’m on the road to recovery”.
“This is my focus and I’m doing everything I can to recuperate.”
According to the NHS, SPA is a rare neurological disorder with features of an autoimmune disease and is “characterszed 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”.
Abnormal postures, often hunched over and stiffened, are characteristic of the disorder, the NHS notes, and some sufferers can be too disabled to walk or move, or “they are afraid to leave the house because street noises, such as the sound of a horn, can trigger spasms and falls.” The disorder is frequently associated with other autoimmune diseases such as diabetes, thyroiditis, vitiligo, and pernicious anemia.
The NHS said that 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”. It is often misdiagnosed as Parkinson’s disease, multiple sclerosis, fibromyalgia, psychosomatic illness, or anxiety and phobia.
Celine first hinted at her health woes in January when she cancelled the North American dates of her Courage world tour from 9 March to 22 April.
She was forced to scrap the shows because of “severe and persistent muscle spasms,” according to a press release posted to her website at the time. The announcement came three months after she had to cancel the start of her Las Vegas comeback residency over the same health issue.
The diagnosis is the latest tragedy to befall Celine following her husband Rene Angelil’s death aged 73 in 2016.
Celine shares three sons with her late husband – Rene-Charles, 20, and twins Nelson and Eddy, 11.
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