01/12/2015:

İSİM: Irina 

YAŞ: 18

ÜLKE: Fransa

LGMD Alt Tip: LGMD 2A / Calpainopathy

KAÇ YAŞINDA TEŞHIS KONULDU? When I was 14 years old.

İLK BELIRTILERINIZ NEYDI?
The first symptom that I experienced was having difficulty running.

DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD: No.
LGMD İLE YAŞARKEN KARŞILAŞTIĞINIZ EN BÜYÜK ZORLUKLARIN NELER OLDUĞUNU DÜŞÜNÜYORSUNUZ:
Stairs…there are just so many of them! Also, not knowing if people feel sympathy or just pity.

EN BÜYÜK BAŞARINIZ NEDIR?
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.

LGMD BUGÜN OLDUĞUNUZ KIŞI OLMANIZDA SIZI NASIL ETKILEDI?
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.

DÜNYANIN LGMD HAKKINDA NE BİLMESİNİ İSTİYORSUNUZ:
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!

LGMD HASTALIĞINIZ YARIN "TEDAVİ" EDİLEBİLECEK OLSA, YAPMAK İSTEYECEĞİNİZ İLK ŞEY NE OLURDU:
To run after the bus that I just missed!