01/12/2015:

NAME: Irina  LGMD2A - Irina

AGE: 18

COUNTRY: France

LGMD Sub-Type: LGMD 2A / Calpainopathy

AT WHAT AGE WERE YOU DIAGNOSED: When I was 14 years old.

WHAT WERE YOUR FIRST SYMPTOMS:
The first symptom that I experienced was having difficulty running.

DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD: No.
WHAT DO YOU FIND TO BE THE GREATEST CHALLENGES IN LIVING WITH LGMD:
Stairs…there are just so many of them! Also, not knowing if people feel sympathy or just pity.

WHAT IS YOUR GREATEST ACCOMPLISHMENT:
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.

HOW HAS LGMD INFLUENCED YOU INTO BECOMING THE PERSON YOU ARE TODAY:
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.

WHAT DO YOU WANT THE WORLD TO KNOW ABOUT 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!

IF YOUR LGMD COULD BE “CURED” TOMORROW, WHAT WOULD BE THE FIRST THING THAT YOU WOULD WANT TO DO:
To run after the bus that I just missed!

Irina
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