01/12/2015:

NOME: Irina 

ETÀ: 18

PAESE: Francia

LGMD Sottotipo: LGMD 2A / Calpainopathy

A CHE ETÀ LE È STATA DIAGNOSTICATA: When I was 14 years old.

QUALI SONO STATI I PRIMI SINTOMI:
The first symptom that I experienced was having difficulty running.

DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD: No.
QUALI SONO, SECONDO LEI, LE MAGGIORI SFIDE NEL VIVERE CON LA LGMD:
Stairs…there are just so many of them! Also, not knowing if people feel sympathy or just pity.

QUAL È IL SUO PIÙ GRANDE RISULTATO:
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.

IN CHE MODO LA LGMD L'HA INFLUENZATA NEL DIVENTARE LA PERSONA CHE È OGGI:
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.

COSA VOLETE CHE IL MONDO SAPPIA DELLA 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!

SE LA VOSTRA LGM POTESSE ESSERE "CURATA" DOMANI, QUALE SAREBBE LA PRIMA COSA CHE VORRESTE FARE?:
To run after the bus that I just missed!