08/18/2015

이름: Martin  AGE: 42 yrs. old

국가: United Kingdom

LGMD 하위 유형: LGMD2A / Calpainopathy

 

몇 살에 진단받으셨나요?:

I was diagnosed when I was 23 years old.

첫 증상은 무엇이었나요?:

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

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요?

Yes, my older brother also has LGMD.

LGMD와 함께 생활하면서 가장 어려운 점은 무엇인가요?:

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)

가장 큰 성과는 무엇인가요?:

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.

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?

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.

LGMD에 대해 전 세계에 알리고 싶은 내용:

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.

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

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.

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