01/12/2015:

名前: Irina 

年齢: 18

国： フランス

LGMD サブタイプ LGMD 2A / Calpainopathy

何歳で診断されましたか？ When I was 14 years old.

最初の症状は何でしたか？
The first symptom that I experienced was having difficulty running.

DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD: No.
LGMDと共に生きる上で、最も困難だと感じることは何ですか？
Stairs…there are just so many of them! Also, not knowing if people feel sympathy or just pity.

あなたの最大の功績は何ですか？
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.

LGMDは今のあなたにどのような影響を与えていますか？
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.

LGMDについて世界に何を知ってもらいたいですか？:
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!

もし明日、あなたのLGMDが「治る」としたら、まず何をしたいですか？:
To run after the bus that I just missed!