04/20/2015:

İsim:  Jane

Yaş:  18 yrs. old

Ülke:   United Stated

LGMD Alt Tipi:  LGMD2i

 

Kaç yaşında teşhis konuldu?:

I was diagnosed when I was 5 years old.

İlk belirtileriniz neydi?:

I was experiencing difficult climbing stairs and keeping up with my peers on the playground.

LGMD hastası olan başka aile üyeleriniz var mı?

No, I am the only person in my family with limb girdle muscular dystrophy.

LGMD ile yaşamanın en büyük zorluklarının ne olduğunu düşünüyorsunuz?:

I find that it is difficult searching for accessible paths when in an unfamiliar setting.   It can also be challenging to have to pace myself – more than my friend.

En büyük başarınız nedir?:

I suffered a major accident in October, 2014.  My greatest accomplishment is working so hard to walk independently again.  I was told no weight bearing on my legs while in the hospital for a month.  But, after several consultations with multiple doctors, they reversed the orders.  I worked hard every day to be able to walk out of the hospital on my own, one month later!

LGMD bugün olduğunuz kişi olmanızda sizi nasıl etkiledi?

It has taught me to think outside the box – to be creative and original.

Dünyanın LGMD hakkında ne bilmesini istersiniz?:

Just because one is physically disabled doesn’t mean you are mentally disabled.

LGMD hastalığınız yarın "tedavi edilebilseydi", yapmak isteyeceğiniz ilk şey ne olurdu?:

I would run a race and jump for joy!