08/18/2015

名称: Martin  年齢: 42 yrs. old

国名: United Kingdom

LGMDサブタイプ: LGMD2A / Calpainopathy

 

何歳で診断を受けたか:

I was diagnosed when I was 23 years old.

最初の症状は？:

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

ご家族にLGMDの方はいらっしゃいますか？

Yes, my older brother also has LGMD.

LGMDと共に生きていく上で、最も困難だと感じることは何ですか？:

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)

あなたの最大の功績は何ですか？:

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は今のあなたにどのような影響を与えていますか？

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.

LGMDについて世界に知ってもらいたいことは？:

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.

もし明日、あなたのLGMDが "治る "としたら、まず何をしたいですか？:

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.

LGMDスポットライト・インタビュー "をもっと読みたい方、またはボランティアでインタビューに参加したい方は、ウェブサイトをご覧ください： https://www.lgmd-info.org/spotlight-interviews