08/18/2015

名称: Martin  年龄: 42 yrs. old

国家: United Kingdom

LGMD 子类型: LGMD2A / Calpainopathy

 

您在几岁时被确诊:

I was diagnosed when I was 23 years old.

您最初的症状是什么？:

I had a fall in a garage, dislocated my knee and that wouldn’t repair itself in the time expected.

您是否有其他家庭成员患有 LGMD：

是的，我哥哥也患有 LGMD。

您认为 LGMD 患者在生活中面临的最大挑战是什么？:

My greatest challenges are climbing stairs and trying to get people to understand how hard it is to be an ambulant disabled person that is determined to stay on my feet as long as possible. (and wobbles a bit)

您最大的成就是什么？:

Realizing that I could write about Muscular Dystrophy and people listened too! I’ve gone on to raise awareness and vital funds for research, attending the houses of Parliament, making sports and TV personalities aware of these conditions via social media, being recognized and rewarded by MDUK for all my efforts to raise awareness and funds for research, changing my career to be in a position of helping others, being a dad to three great girls, trying to be a good role model and to stay positive all of the time.

LGMD 是如何影响您成为今天的自己的？

Quite ironically I think that LGMD has made me stronger than what I ever thought I would be, I am extremely determined to let everyone know all about these conditions and make life easier for many others in the future.

您希望世界了解 LGMD 的哪些方面？:

That it exists would be a good start! It was not until my diagnosis and years later when I started to talk about the condition that it occurred to me that my family, friends and society in general had not heard of ANY type or strain of Muscular Dystrophy and that has to change; it’s imperative that people know about these conditions.

如果您的 LGMD 明天就能 "治愈"，您首先想做的是什么？:

To run on a beach as fast as I possibly could (think of the film ‘Chariots of fire’ and to the Vangelis soundtrack too!) and then have the biggest hug with all my girls and my wife.

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