03/28/2016

LGMD "焦点访谈"

名称：  Emily     年龄: 29 岁

国家:  United Kingdom

LGMD 子类型: LGMD2B

 

您在几岁时被确诊:

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

您最初的症状是什么？:

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

您是否有其他家庭成员患有 LGMD：

No, it’s just me – all by myself!

您认为 LGMD 患者在生活中面临的最大挑战是什么？:

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.

您最大的成就是什么？:

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 是如何影响您成为今天的自己的？

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!

您希望世界了解 LGMD 的哪些方面？:

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

如果您的 LGMD 明天就能 "治愈"，您首先想做的是什么？:

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!

 

如需阅读更多 "LGMD 焦点访谈"，或自愿参加即将举行的访谈，请访问我们的网站：  https://www.lgmd-info.org/spotlight-interviews