NEQ: 1180593601
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fight dmop oculopahryngeal muscular dystrophy
We were incorporated as a non-profit organization on
February 5, 2025. Our goal is to inform the general public and raise funds for research.
We will be organizing several events
and this a little everywhere in Quebec. To do this we will need volunteers who can give a little time for the cause.
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Oculopharyngeal muscular dystrophy is a genetic disease characterized by a drooping of the upper eyelid and difficulty swallowing.
Symptoms worsen over time, and the patient prefers liquid diets for nourishment. As the disease progresses, other signs appear.
Atrophy and weakness of the tongue, muscle weakness at the extremities, inability to raise the gaze, facial muscle weakness, and muscle weakness at the roots of the limbs.
The most severe cases represent between 5 and 10% of cases, and may require wheelchair use.
Although quality of life is significantly affected, muscular dystrophy does not reduce life expectancy.
In Quebec, the incidence is one in a thousand people (1:1,000), while in France, it is one in 100,000 (1:100,000). The disease was first identified in a French-Canadian family in 1915.