Leading up to Rare Disease Day, we're raising awareness of the 300+ million people living with a rare disease. People like Shanna, who has LGMD 2C. Watch and share her story to raise awareness.
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“My life is frail, but I want it to be full, I don’t want it to be ordinary, I want it to be extraordinary and for that I need help. I have someone helping me 24/7.”
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:
When I found about about my disease I remember thinking that my life was over.
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 ...!