01/12/2015:

이름: Irina 

AGE: 18

국가: 프랑스

LGMD 하위 유형: LGMD 2A / Calpainopathy

몇 살에 진단을 받으셨나요? When I was 14 years old.

첫 증상은 무엇이었나요?
The first symptom that I experienced was having difficulty running.

DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD: No.
LGMD와 함께 생활하면서 가장 큰 어려움은 무엇이라고 생각하나요?
Stairs…there are just so many of them! Also, not knowing if people feel sympathy or just pity.

가장 큰 성과는 무엇인가요?
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.

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?
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.

세상이 LGMD에 대해 알았으면 하는 것:
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!

내일 LGMD가 "완치"될 수 있다면 가장 먼저 하고 싶은 일은 무엇입니까?:
To run after the bus that I just missed!