01/12/2015:

ИМЯ: Irina 

ВОЗРАСТ: 18

СТРАНА: Франция

LGMD Подтип: LGMD 2A / Calpainopathy

В КАКОМ ВОЗРАСТЕ ВАМ ПОСТАВИЛИ ДИАГНОЗ: When I was 14 years old.

КАКОВЫ БЫЛИ ВАШИ ПЕРВЫЕ СИМПТОМЫ:
The first symptom that I experienced was having difficulty running.

DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD: No.
ЧТО, ПО ВАШЕМУ МНЕНИЮ, ЯВЛЯЕТСЯ НАИБОЛЬШЕЙ ТРУДНОСТЬЮ В ЖИЗНИ С ЛГМД:
Stairs…there are just so many of them! Also, not knowing if people feel sympathy or just pity.

КАКОЕ ВАШЕ САМОЕ БОЛЬШОЕ ДОСТИЖЕНИЕ:
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.

КАК БОЛЕЗНЬ ЛГМ ПОВЛИЯЛА НА ТО, ЧТО ВЫ СТАЛИ ТЕМ ЧЕЛОВЕКОМ, КОТОРЫМ ЯВЛЯЕТЕСЬ СЕГОДНЯ:
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.

ЧТО ВЫ ХОТИТЕ, ЧТОБЫ МИР УЗНАЛ О ЛГМД:
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!

ЕСЛИ БЫ ЗАВТРА МОЖНО БЫЛО БЫ "ВЫЛЕЧИТЬ" ВАШ ЛГМД, ЧТО БЫ ВЫ СДЕЛАЛИ В ПЕРВУЮ ОЧЕРЕДЬ:
To run after the bus that I just missed!