01/12/2015:

NOM: Irina 

AGE: 18

PAYS : France

LGMD Sous-type : LGMD 2A / Calpainopathy

À QUEL ÂGE AVEZ-VOUS ÉTÉ DIAGNOSTIQUÉ ? When I was 14 years old.

QUELS ONT ÉTÉ VOS PREMIERS SYMPTÔMES :
The first symptom that I experienced was having difficulty running.

DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD: No.
QUELS SONT, SELON VOUS, LES PLUS GRANDS DÉFIS À RELEVER POUR VIVRE AVEC LA LGMD :
Stairs…there are just so many of them! Also, not knowing if people feel sympathy or just pity.

QUELLE EST VOTRE PLUS GRANDE RÉALISATION :
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.

COMMENT LA LGMD VOUS A-T-ELLE INFLUENCÉ POUR QUE VOUS DEVENIEZ LA PERSONNE QUE VOUS ÊTES AUJOURD'HUI :
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.

QUE VOULEZ-VOUS QUE LE MONDE SACHE SUR LA 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!

SI VOTRE LGMD POUVAIT ÊTRE "GUÉRIE" DEMAIN, QUELLE SERAIT LA PREMIÈRE CHOSE QUE VOUS SOUHAITERIEZ FAIRE ?:
To run after the bus that I just missed!