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In a moving message posted on Instagram this Thursday, December 8, Celine Dion told her fans that she suffered from a rare neurological disease, stiff man syndrome. Focus on this disorder which will prevent him from carrying out a large part of his European tour.
“I’ve always been an open book, but I wasn’t ready to talk about what’s happening to me.”is how Celine Dion begins this December 8 a message for her fans on Instagram, yet determined to inform her public of her health problems.
With tears in her eyes, facing the camera, the singer then reveals the reason for her notable absence this year 2022:
“I was diagnosed with a rare neurological disorder called stiff person syndrome (Editor’s note: “Stiff-man syndrome” or “stiff man syndrome” in French)which affects one in a million people”.
Neurological damage that prevents him from singing
Celine Dion continues her confession, without taboo:
“We don’t know everything about this disease yet, but we now know that it causes the muscle spasms I suffer from” she mentions.
Thus she lists the attacks on her walk but also on her vocal cords, a difficult consequence for the one who marked the world with her extraordinary voice: “Singing is what I’ve done all my life, not being able to do it anymore is unimaginable”
Canceled concerts, what next?
Without knowing much more, the damage seems serious enough to have to review her schedule: the disease is now forcing her to cancel a large part of her “Courage World Tour” scheduled for 2023 in Europe.
“I train every day, to regain strength and endurance, to perform again” continues Celine Dion on the verge of tears, now wishing to focus on her health, without knowing when she will be ready to return to the stage.
Celine Dion, who had started her tour before the start of the Covid pandemic, was due to resume it in January 2022, but had canceled her return due to health problems. We now know why.
What is Stiff-man Syndrome or Stiff-Man Syndrome?
According to orphanet, the portal for rare diseases and orphan drugs, stiff-man syndrome is a rare neurological condition that combines fluctuating rigidity of the trunk and limbs, painful muscle spasms, phobia associated with performing certain tasks , a tendency to jump in an exaggerated way and ankylosing deformities, such as a lumbar posture frozen in hyperlordosis (exaggeration of the curvature of the lower back).
It affects 1 in a million people, most often around the age of 45. Symptoms evolving over months or years.
Progressive muscle stiffness leads to immobility of the trunk and hips and the gait becomes stiff and peculiar. Spontaneous or reflex muscle spasms are added to this, which can cause severe falls. A specific fear of crossing open spaces (pseudo-agoraphobia) can cause sudden stopping, sudden spasms and falls. This disease is often associated with insulin-dependent diabetes (30%), autoimmune thyroiditis (10%) or atrophic gastritis with pernicious anemia (5%) and some breast, lung or colon tumors.
It is thought that this disease is autoimmune because the presence of anti-glutamic acid decarboxylase (GAD) antibodies is found in more than 70% of cases. These antibodies could block the synthesis of gamma amino-butyric acid (GABA), a neurotransmitter.
For Dr. Wilfrid Casseron, neurologist contacted by Doctissimo, the diagnosis is essentially based on clinical observation, confirmed by the demonstration of circulating anti-GAD antibodies and an emg (electromyogram) which must detect characteristic activity. A CT scan of the spinal cord can rule out mechanical causes such as a herniated disc or a cyst in the spinal cord. Cerebrospinal fluid examination by lumbar puncture is sometimes necessary to rule out a process “Only these examinations are able to tell if it is a ‘stiff man’, a disease of the spinal cord, a rheumatological disease, myotomy, or even tetanus” he explains.
In the case of a stiff man syndrome, few treatments exist “Valium (diazepam) and baclofen will help with muscle stiffness. Some treatments exist based on intravenous immunoglobulin, or corticosteroids, but the results are not constant and do not work for everyone. The physiotherapist is also essential to improve the condition. However, if the disease is difficult to live with, it is not life-threatening.”
And to the question of whether Celine Dion will be able in the more or less near future to find the stage, without wanting to play the guesser, the neurologist advances: “It will certainly depend on his development. A spinal stiffness that sets in, it’s not easy to sing, but there is no doubt that Celine Dion, at her level, must be followed by the greatest American neurologists”.