OSOBA Z LGMD: Emily

03/28/2016

LGMD "WYWIAD W ŚWIETLE REFLEKTORÓW"

Imię i nazwisko:  Emily     Wiek29 latLGMD2B - Emily

Kraj:  United Kingdom

Podtyp LGMD: LGMD2B

 

W jakim wieku zostałeś zdiagnozowany?:

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

Jakie były pierwsze objawy?:

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

Czy masz innych członków rodziny cierpiących na LGMD?

No, it’s just me – all by myself!

Co uważasz za największe wyzwanie w życiu z LGMD?:

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.

Jakie jest twoje największe osiągnięcie?:

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.

Jak LGMD wpłynęło na to, że stałeś się osobą, którą jesteś dzisiaj:

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!

Co chciałbyś, aby świat dowiedział się o LGMD?:

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

Gdyby jutro można było "wyleczyć" chorobę LGMD, co byłoby pierwszą rzeczą, którą chciałbyś zrobić?:

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!

 

Aby przeczytać więcej wywiadów "LGMD Spotlight Interviews" lub zgłosić się do udziału w nadchodzącym wywiadzie, odwiedź naszą stronę internetową:  https://www.lgmd-info.org/spotlight-interviews