01/12/2015:

NOME: Irina 

IDADE: 18

PAÍS: França

LGMD Sub-tipo: LGMD 2A / Calpainopathy

COM QUE IDADE FOI DIAGNOSTICADO: When I was 14 years old.

QUAIS FORAM OS SEUS PRIMEIROS SINTOMAS:
The first symptom that I experienced was having difficulty running.

DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD: No.
QUAIS SÃO, NA SUA OPINIÃO, OS MAIORES DESAFIOS DE VIVER COM LGMD:
Stairs…there are just so many of them! Also, not knowing if people feel sympathy or just pity.

QUAL É A SUA MAIOR REALIZAÇÃO:
I was able to get to the top of the Cathedral Santa Maria del Fiore famously known as “The Duomo” in Italy. It has 465 grueling steps to the top! But better than that, the greatest accomplishment of mine is to stay happy and keep smiling no matter what.

COMO É QUE A LGMD O INFLUENCIOU A TORNAR-SE A PESSOA QUE É HOJE?
Knowing that I have LGMD has made me grow up or to be more mature for my age. I have become calm and relaxed by not letting the little things bother me. I also find that I worry less – only about what is important. I don’t have time to worry about trifles.

O QUE É QUE QUER QUE O MUNDO SAIBA SOBRE A LGMD:
I want people to know that the disease of LGMD exists! That just because someone has trouble running – don’t call them lazy. Also, if a girl uses a walking stick it is probably because she needs it – it is not about looking good!

SE A SUA LGMD PUDESSE SER "CURADA" AMANHÃ, QUAL SERIA A PRIMEIRA COISA QUE GOSTARIA DE FAZER:
To run after the bus that I just missed!