06/24/2016

LGMD "焦点访谈"

名称:  Donna-Marie      年龄:32 岁

国家: United Kingdom

LGMD 子类型:LGMD2i

您在几岁时被确诊:

I stared tests at 12 years old, had a Muscular Dystrophy diagnosis at 13 and the subtype a few years later.

您最初的症状是什么？:

Generally being slower than other children in PE lessons. My teachers noticed that I couldn’t keep up but knew I was too much of a goody two shoes that I had to be trying my hardest!

您是否有其他家庭成员患有 LGMD：

Nope, I’m 100% unique J

您认为 LGMD 患者在生活中面临的最大挑战是什么？:

The greatest challenge for me is how it affects me mentally; I know that I am lucky with my LGMD and that I could have much bigger problems so I try not to complain too much about it but  I did spend a couple of years wanting to hide from the people who stare at me and my limp. My boyfriend of 4 years has changed my attitude to my disability more than I could have ever imagined and although I don’t care about people looking at me anymore, I sometimes struggle when we go out as I feel embarrassed for him when people stare at us and feel like he should be with someone “normal” at his age.

I also hate that I can’t storm off during an argument, especially if I’m sat down on a low chair, ha ha!

您最大的成就是什么？:

I’d love to say that my greatest achievement is something to do with a career but I have to say that in that department I don’t have much to brag about. But I find it an accomplishment that I manage to keep going and stay positive. I have a modest career but I do still work and socialize.  I don’t try to hide away anymore feeling like Quasimodo!

LGMD 是如何影响您成为今天的自己的？

LGMD has made me grateful for the amazing people I have in my life. I could not wish for a better family, partner or friends.

您希望世界了解 LGMD 的哪些方面？:

I’d like the world to know that LGMD doesn’t affect my brain or my eyes!

I don’t need to be talked to like a child and I can see the nudges, whispers and stares.

 

如果您的 LGMD 明天就能 "治愈"，您首先想做的是什么？:

There are so many things I could list here but the truth is that I think the very first thing I would do is go out and celebrate with as many drinks as I could handle and not worry that if I fall down, I stay down! And maybe throw in dancing on a few bars J

But as that was a pretty rubbish answer I’d like to add that afterwards I’d go away on a nice holiday with my boyfriend and family where none of them had to worry about if the ground was too uneven, or if there are any steps, or that I can’t walk on the beach or get in/out of a pool or up from a chair.

 

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。