Patients with difficult-person syndrome must go through a long and difficult path before they succeed in receiving a diagnosis.
“It’s a very rare disease, and you really have to take a lot of steps. I saw many doctors, including some in the United States, four years before I got the diagnosis. I’m often told it’s all in my head,” said the Quebecer, who has Stiff Person Syndrome, also known as Stiff Person Syndrome. A city dweller says.
Celine Dion announced yesterday that she had lived with the neurological disease for twenty years, who did not want to be named.
“The first symptom was when someone made fun of me and I got a cramp in my left leg,” says the 60-year-old, who initially feared she had amyotrophic lateral sclerosis, a disease that causes progressive muscle weakness.
“Then, as soon as I laughed, was sad or felt an emotion or had symptoms like eating. I was stiff,” says the former nurse, who had to end her life because of the disease.
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Pain and trauma
It is impossible for her to work when she is completely blocked from one moment to the next by the stiffness of her muscles.
“I don’t go to restaurants anymore since I’m stuck in a chair. It’s traumatic,” says the man, who has trouble expressing because the disease also affects his maxillofacial muscles.
It’s the same story as 65-year-old Quebecer, who lived for fifteen years with convulsions and “all over his body.”
“My first thought in the morning was: Another day of suffering, says the man, who did not want to be identified. I had cramps all over my body, under my mouth, in my neck, near my navel, around my heart…”
Today, he controls his disease, diagnosed years later, thanks only to magnesium bisglycinate tablets.
For a Quebec City resident, Celine Dion’s announcement may finally put the disease on the map.
“It will advance research and at least make the health system aware of this disease, because at the moment it’s not good for rare diseases,” she laments, laughing that the famous Quebec singer might have had less trouble diagnosing the disease. condition.
Many health professionals also recognize this problem.
“It’s a hurdle. Until they consult us, they’ve seen half a dozen doctors,” admits Dr. Stéphane Potes, a neurologist at the University Hospital Center of Montreal (CHUM).
For her part, Gail Ouellet, head of the Quebec Reorganization of Orphan Diseases, is adamant the disease is underdiagnosed.
“There’s a lack of knowledge and resources, says Gail Ouellet, head of the Quebec Reorganization of Orphan Diseases. It’s common to go years without a diagnosis.
Despite everything, the former nurse remains optimistic and sees the glass as half full.
“I’m sure one day I’ll be able to run or cycle again like I used to,” she says.
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