03/28/2016

LGMD "ИНТЕРВЬЮ В ЦЕНТРЕ ВНИМАНИЯ"

Имя:  Emily     Возраст: 29 лет.

Страна:  United Kingdom

LGMD Подтип: LGMD2B

 

В каком возрасте вам был поставлен диагноз:

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

Каковы были ваши первые симптомы:

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

Есть ли у вас другие члены семьи, страдающие LGMD:

No, it’s just me – all by myself!

Что, по вашему мнению, является наибольшей проблемой в жизни с 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.

Какое ваше самое большое достижение:

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.

Как LGMD повлиял на то, что вы стали тем человеком, которым являетесь сегодня:

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!

Что вы хотите, чтобы мир узнал о LGMD:

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

Если бы ваш LGMD можно было "вылечить" завтра, что бы вы хотели сделать в первую очередь:

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!

 

Чтобы прочитать другие интервью "LGMD Spotlight Interviews" или стать добровольцем для участия в предстоящем интервью, посетите наш сайт:  https://www.lgmd-info.org/spotlight-interviews