Experiences and stories

MANDINE: innocence in combat



Behind the first difficulties and the first symptoms;

behind the wandering of the medical profession in the face of disease and the fight to have a diagnosis;

behind the falling ax, the tears and the incomprehensible vocabulary "progressive genetic disease", "incurable", "calpainopathy (LGMD R1 / ex. LGMD 2A)";

there was a little voice whispering to me:

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Matis, silent warrior with LGMD2D


Good morning all, My name is Matis Lagarde, I live near Bordeaux; I come from a family of sportsmen and more particularly rugby players. By descent, I played rugby from the age of 6 with a lot of passion. But very quickly the long-term exertion became very difficult for me and after a long and painful journey my disease, alpha-sarcoglycanopathy or LGMD R3 (formerly LGMD 2D) was diagnosed. I was then 10 years old ...!

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The Story of Arthur with Gamma-Sarcoglycanopathy



Like all great stories, this one begins with once upon a time.

Once upon a time, there was a young boy named Arthur, a child with a smile beaming like 1000 suns. From an early age, he was attracted to all sports. From the age of 6 he started athletics. He likes training and competitions, then he goes on to two years of tennis with internships each vacation. Whatever the challenge, he takes it up, always with that sparkling smile.
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Mélanie, explorer of the world and of science



My name is Mélanie, I am 33 years old and I live in the South-East of France.

When I was 4 years old, I was diagnosed with Muscular Dystrophy of Unknown Type via two muscle biopsies, after an odyssey, going from doctor to doctor. Yes, I showed symptoms quite early on, when I was about 1 year old. Walking on all fours - mission impossible! And then I couldn't get up from the ground, I would fall head first every time I tried to climb the stairs. Despite my football calves, I was never able to run, my legs were too weak.

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