LGMD Spotlight interview:   

İsim:  Steven  Yaş:  57 yrs. old

Ülke: Birleşik Devletler

LGMD Alt Tipi :  LGMD (sub-type unknown)

 

Kaç yaşında teşhis konuldu?:

I was diagnosed at the age of 43.

İlk belirtileriniz neydi?:

Vague symptoms have been present since birth.  I had a waddling gait, could not climb, had difficulty with stairs but the doctors could not diagnose the cause.  My mother always knew something was wrong….but what?  I was finally diagnosed with LGMD when heart problems began at the age of 43.

LGMD hastası olan başka aile üyeleriniz var mı?

Yes, most likely.  A second cousin (female) and my Grandpa Stone possibly had a form of MD because he was crippled from youth but back then they called it “rheumatism”.  I also had another second cousin (male) who was totally helpless and died young.

LGMD ile yaşamanın en büyük zorluklarının ne olduğunu düşünüyorsunuz?:

The greatest challenge are falls!  I was in Boy Scouts since the age of 11 and had difficulty keeping up with other boys in activities.  I have experienced numerous falls.  I require the rescue squad and neighbors to help me up as my wife is usually at work when I fall.

En büyük başarınız nedir?:

My greatest accomplishments include fathering 4 children – 3 of which are still living.  I was able to hold a job for 25 years and volunteered with the local rescue squad for 38 years; beginning at the age of 16.  I continue to volunteer with the rescue squad but only answer the phone.

I served as a Boy Scout Leader (assistant scout Master for 25 years.)  Currently, I am now an organizational representative.  I was an Eagle Scout in 1978.  For my Eagle project, I did a church cassette tape ministry.  I continue to serve as the sound man at church today,

LGMD bugün olduğunuz kişi olmanızda sizi nasıl etkiledi?

All of my life – everything that I do is a challenge!  But with work and determination, I have ‘Kept on Keeping on.’   I am determined to stay as active as I can be despite my LGMD.

Dünyanın LGMD hakkında ne bilmesini istersiniz?:

LGMD makes every accomplishment a real challenge.  But work and the desire to succeed can make many things possible.  My whole life has been hard but it could be worse….especially if I had a different type of muscular dystrophy or I had a more severe form of LGMD.

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

If my LGMD could be cured tomorrow, I would want to be recertified as an EMT and then volunteer on active duty with the rescue squad.

 

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