03/28/2016

LGMD "SPOT IŞIĞI RÖPORTAJI"

İsim:  Emily     Yaş: 29 yrs. old

Ülke:  United Kingdom

LGMD Alt Tipi: LGMD2B

 

Kaç yaşında teşhis konuldu?:

I received confirmation of my LGMD2B diagnosis at the age 28 but at the age of 24 it was already suspected.

İlk belirtileriniz neydi?:

My first symptom was struggling to climb stairs and I also noticed that I couldn’t stand on tip toes to reach books on my bookshelf

LGMD hastası olan başka aile üyeleriniz var mı?

No, it’s just me – all by myself!

LGMD ile yaşamanın en büyük zorluklarının ne olduğunu düşünüyorsunuz?:

There are many challenges. Like trying to be accepted as “disabled” when I don’t use a wheelchair. I find people don’t want to talk to me about it in general, which can be very isolating! At times I get self-conscious and anxious. Falling over in front of people is the worse and struggling to do things I once could is quite sad. I miss being able to run! Also the need to try and explain yourself. Having the odd wobble and feeling pathetic or weak.

En büyük başarınız nedir?:

At the moment, leaving home and living independently in the countryside. I also volunteer for Muscular Dystrophy UK as a peer supporter, which to me is an amazing accomplishment.

LGMD bugün olduğunuz kişi olmanızda sizi nasıl etkiledi?

Having LGMD has definitely given me a different outlook! I’ve learned to appreciate smaller things in life and become more determined to achieve things on any scale. I feel very positive and want to turn my diagnosis around to focus on the good things not the bad. It’s made me more aware and empathetic, I want to help others like myself. It’s aided my ‘wicked’ sense of humor too!

Dünyanın LGMD hakkında ne bilmesini istersiniz?:

Everything! I just want people to understand the complexities of these conditions and the condition itself.

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

This is a tough question, there are so many!

I’d probably want to run first but also get on a sporty motorbike and learn to ride!

 

Daha fazla "LGMD Spotlight Röportajı" okumak veya gelecek bir röportajda yer almak için gönüllü olmak için lütfen web sitemizi ziyaret edin:  https://www.lgmd-info.org/spotlight-interviews