lgmd.afm-telethon.fr/
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:
lgmd.afm-telethon.fr
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 ...!
Like all great stories, this one begins with once upon a time.
lgmd.afm-telethon.fr/
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.
The man investigating his rare disease: "There are many questions to be answered"– Carles Interview –
Lavanguardia
July 25th 2020
