01/12/2015:

NAME: Irina 

AGE: 18

LAND: Frankreich

LGMD Unter-Typ: LGMD 2A / Calpainopathy

IN WELCHEM ALTER WURDE BEI IHNEN DIE DIAGNOSE GESTELLT? When I was 14 years old.

WAS WAREN IHRE ERSTEN SYMPTOME?
The first symptom that I experienced was having difficulty running.

DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD: No.
WAS SIND FÜR SIE DIE GRÖSSTEN HERAUSFORDERUNGEN IM LEBEN MIT LGMD:
Stairs…there are just so many of them! Also, not knowing if people feel sympathy or just pity.

WAS IST IHRE GRÖSSTE ERRUNGENSCHAFT:
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.

WIE HAT LGMD SIE ZU DER PERSON GEMACHT, DIE SIE HEUTE SIND?
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.

WAS SOLL DIE WELT ÜBER LGMD WISSEN?:
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!

WENN IHRE LGMD MORGEN "GEHEILT" WERDEN KÖNNTE, WAS WÜRDEN SIE ALS ERSTES TUN WOLLEN?:
To run after the bus that I just missed!