01/12/2015:

الاسم: Irina 

العمر: 18

البلد: فرنسا

النوع الفرعي لـ LGMD LGMD 2A / Calpainopathy

في أي عمر تم تشخيصك When I was 14 years old.

ما هي أعراضك الأولى
The first symptom that I experienced was having difficulty running.

DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD: No.
ما هي في رأيك أكبر التحديات التي تواجهك في التعايش مع مرض الانسداد الرئوي المزمن؟
Stairs…there are just so many of them! Also, not knowing if people feel sympathy or just pity.

ما هو أعظم إنجازاتك:
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.

كيف أثّر بكِ مرض التصلب الجانبي الضموري في أن تصبحي الشخص الذي أنتِ عليه اليوم:
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.

ما الذي تريدين أن يعرفه العالم عن مرض التصلب الجانبي الضموري المتعدد:
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!

إذا كان بالإمكان "علاج" مرضك بالاضطراب العضلي الجانبي الغدي غدًا، فما هو أول شيء تريد القيام به:
To run after the bus that I just missed!