It’s a very rare disorder that’s preventing Canadian singer Celine Dion from making her tour dates courage. Impeded by muscle spasms that affect her movements and control of her voice, Celine Dion can’t help but listen to her doctors and cancel certain concert dates month after month.
Facing the camera, Celine Dion gave herself up this Thursday, December 8th, about this evil that prevents him from doing his job. “I was recently diagnosed with a very rare neurological disorder which in English is called: “Stiff Person Syndrome” [le syndrome de l’homme raide (SHR), en français] that affects one in a million people. We don’t know everything about this rare disease yet, but we do know that it is the cause of my muscle spasms. These cramps affect my everyday life on many levels. I have trouble walking and can’t use my vocal cords to sing the way I want to, she says. It makes me very sad to have to tell you today that I will not be ready to start my tour of Europe in February.”
This very rare disease was first described by Moersch and Woltman in 1956. It affects the central nervous system. The syndrome can be autoimmune, paraneoplastic (associated with cancer), or idiopathic (the origin remains unknown). The syndrome is manifested by a progressive stiffness of the trunk and limbs associated with cramps.
The disease is progressive and its symptoms vary. A genetic origin has been investigated but is not confirmed by the medical literature as the sole cause of this syndrome. As the disease progresses, patients sometimes become unable to walk or bend over. Chronic pain is common and gets worse over time. Stress, cold and infections increase symptoms and sleep reduces them
“I train every day”
“I also train with mine every day therapist in sports medicine to regain strength and endurance so that I can perform well again. But I have to admit it’s an ongoing struggle. Singing is what I’ve done my whole life. I can’t imagine not being able to do that anymore. I miss seeing you, being on stage. At the moment I’m not able to give myself 100%. To find you, I have no choice but to focus on health. I am confident that I am on the right path‘ Celine Dion continues.
On the treatment side benzodiazepines (Tranquilizers) are molecules that help patients manage symptoms, stiffness and spasms. No definitive cure has yet been discovered, and doses often need to be increased as the patient becomes accustomed to them or as the syndrome progresses. Sometimes treatments that target the autoimmune response are used. The search goes on promising innovative treatments such as hematopoietic stem cell transplantation (HSCT) with High Intensity Conditioning protocol.
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