01/12/2015:

姓名: Irina 

年龄: 18

国家： 法国

LGMD 子类型： LGMD 2A / Calpainopathy

你是几岁被诊断出来的？ When I was 14 years old.

你最初的症状是什么？
The first symptom that I experienced was having difficulty running.

DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD: No.
您认为患有 LGMD 的最大挑战是什么？
Stairs…there are just so many of them! Also, not knowing if people feel sympathy or just pity.

你最大的成就是什么？
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 是如何影响你成为今天的自己的？
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.

您希望世界了解 LGMD 的哪些方面？:
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!

如果明天就能 "治愈 "你的老年痴呆症，你最想做的第一件事是什么？:
To run after the bus that I just missed!