01/12/2015:

NAZWA: Irina 

WIEK: 18

KRAJ: Francja

Podtyp LGMD: LGMD 2A / Calpainopathy

W JAKIM WIEKU ZOSTAŁEŚ ZDIAGNOZOWANY? When I was 14 years old.

JAKIE BYŁY PIERWSZE OBJAWY:
The first symptom that I experienced was having difficulty running.

DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD: No.
CO JEST DLA CIEBIE NAJWIĘKSZYM WYZWANIEM W ŻYCIU Z LGMD?
Stairs…there are just so many of them! Also, not knowing if people feel sympathy or just pity.

JAKIE JEST TWOJE NAJWIĘKSZE OSIĄGNIĘCIE?
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.

JAK CHOROBA ALZHEIMERA WPŁYNĘŁA NA TO, ŻE STAŁEŚ SIĘ OSOBĄ, KTÓRĄ JESTEŚ DZISIAJ:
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.

CO CHCIAŁBYŚ, ABY ŚWIAT DOWIEDZIAŁ SIĘ O 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!

GDYBY JUTRO MOŻNA BYŁO "WYLECZYĆ" CHOROBĘ ALZHEIMERA, CO BYŁOBY PIERWSZĄ RZECZĄ, KTÓRĄ CHCIAŁBYŚ ZROBIĆ?:
To run after the bus that I just missed!