01/12/2015:

NOMBRE: Irina 

EDAD: 18

PAÍS: Francia

Subtipo LGMD: LGMD 2A / Calpainopathy

A QUÉ EDAD LE DIAGNOSTICARON: When I was 14 years old.

CUÁLES FUERON SUS PRIMEROS SÍNTOMAS:
The first symptom that I experienced was having difficulty running.

DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD: No.
¿CUÁLES CREE QUE SON LOS MAYORES RETOS DE VIVIR CON LA VGMD:
Stairs…there are just so many of them! Also, not knowing if people feel sympathy or just pity.

¿CUÁL ES SU MAYOR LOGRO?
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.

¿CÓMO TE HA INFLUIDO LA ALGMD PARA CONVERTIRTE EN LA PERSONA QUE ERES HOY?
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.

¿QUÉ QUIERE QUE EL MUNDO SEPA SOBRE LA DGML?:
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 MAÑANA SE PUDIERA "CURAR" SU DGML, ¿QUÉ SERÍA LO PRIMERO QUE DESEARÍA HACER?:
To run after the bus that I just missed!