08/18/2015

İsim: Martin  YAŞ: 42 yrs. old

Ülke: United Kingdom

LGMD Alt Tipi: LGMD2A / Calpainopathy

 

Kaç yaşında teşhis konuldu?:

I was diagnosed when I was 23 years old.

İlk belirtileriniz neydi?:

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

LGMD hastası olan başka aile üyeleriniz var mı?

Evet, ağabeyimde de LGMD var.

LGMD ile yaşamanın en büyük zorluklarının ne olduğunu düşünüyorsunuz?:

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)

En büyük başarınız nedir?:

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 bugün olduğunuz kişi olmanızda sizi nasıl etkiledi?

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.

Dünyanın LGMD hakkında ne bilmesini istersiniz?:

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.

LGMD hastalığınız yarın "tedavi edilebilseydi", yapmak isteyeceğiniz ilk şey ne olurdu?:

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.

Daha fazla "LGMD Spotlight Röportajı" okumak veya gelecek bir röportajda yer almak için gönüllü olmak için lütfen web sitemizi ziyaret edin: https://www.lgmd-info.org/spotlight-interviews