03/28/2016

LGMD "스포트라이트 인터뷰"

이름:  Emily     나이: 29세

국가:  United Kingdom

LGMD 하위 유형: LGMD2B

 

몇 살에 진단받으셨나요?:

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

첫 증상은 무엇이었나요?:

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

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요?

No, it’s just me – all by myself!

LGMD와 함께 생활하면서 가장 어려운 점은 무엇인가요?:

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.

가장 큰 성과는 무엇인가요?:

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.

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?

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!

LGMD에 대해 전 세계에 알리고 싶은 내용:

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

내일 LGMD가 "완치"될 수 있다면 가장 먼저 하고 싶은 일은 무엇인가요?:

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!

 

더 많은 'LGMD 스포트라이트 인터뷰'를 읽거나 다음 인터뷰에 출연을 신청하려면 다음 웹사이트를 방문하세요:  https://www.lgmd-info.org/spotlight-interviews