7 September is International Duchenne Muscular Dystrophy Awareness Day

The 10th World Duchenne Muscular Dystrophy Day, on 7 September, is a call to action to break down the physical, social and healthcare barriers faced by the 250,000 people worldwide affected by this disease. With the theme “Duchenne: breaking down the barriers”, the day dedicated to raising awareness of Duchenne muscular dystrophy aims to encourage an open society, offering equal opportunities for all.

A documentary is available on the Day’s theme, depicting the lives of people living with Duchenne muscular dystrophy around the world and how they break down barriers in their personal lives.

 

100 to 150 newborns affected by the disease in France every year

Duchenne muscular dystrophy is the most common neuromuscular disease. It appears in childhood and develops very gradually: often, around the age of 3 or 4, the first motor difficulties appear, sometimes with problems walking and increased tiredness. Over the years, the disease attacks the muscles of the trunk, breathing and heart! On average, Duchenne muscular dystrophy affects 4.78 people per 100,000. This means that between 100 and 150 newborn boys in France are affected by Duchenne muscular dystrophy every year.

 

Benjamin, an ambassador for the Telethon 2022, has Duchenne muscular dystrophy. He tells his story (in French):

 

Duchenne muscular dystrophy research at the Institute

Within the Myology Centre for Research, France Pietri-Rouxel heads the Gene Therapy for DMD & Skeletal Muscle Pathophysiology Group, which aims to optimise the therapeutic approach for treating Duchenne muscular dystrophy, to characterise the phenotypic and genomic characteristics of Becker patients carrying the deletion of exons 45 to 55, and to decipher the mechanisms governing skeletal muscle plasticity, an essential step in understanding its pathophysiological processes.

 

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