LGMD "SPOT IŞIĞI RÖPORTAJI"

İsim:  Fred   Yaş: 36 yrs. old

Ülke: Birleşik Devletler

LGMD Alt Tipi:  LGMD2A  / Calpainopathy

 

Kaç yaşında teşhis konuldu?:

Bana 13 yaşımda teşhis konuldu.

İlk belirtileriniz neydi?:

Looking back I was always slightly slower than the other kids but I can’t say there was one symptom which my parents or I noticed.  I was diagnosed on a fluke. I had gone skiing with a church group and ultimately broke my leg.  When I went to the hospital emergency room for my broken leg, a Dr noticed that I was not as strong as I should have been at that age.  That resulted in a muscle biopsy.  Initially, I was diagnosed with Becker’s MD, this was all pre-DNA testing.

LGMD hastası olan başka aile üyeleriniz var mı?

Hayır, bir tek ben varım.

LGMD ile yaşamanın en büyük zorluklarının ne olduğunu düşünüyorsunuz?:

The greatest challenge for me is not being able to hold my 7-month old without assistance. Constantly having to advocate for me as it pertains to this condition.  I never noticed how many people have “ableist” attitudes. The last for me would be not being able to freely visit friends and family.

En büyük başarınız nedir?:

I have so many accomplishments, but if I could only choose one I’d say working my way off of SSI. After my diagnosis, I had given up hope of ever having a job, a car, a home, a family of my own etc. Today, I am a state police dispatcher, I drive, I have a beautiful family, I’m currently looking to purchase my first home, and I’m optimistic that when the time comes and I no longer can physically do the job I have that God will provide another opportunity.

LGMD bugün olduğunuz kişi olmanızda sizi nasıl etkiledi?

LGMD has taught me how to fight for what I want.  It’s taught me that I’m never as limited as I may think.  Anything is possible.

Dünyanın LGMD hakkında ne bilmesini istersiniz?:

That LGMD has not been cured yet but, with their help, it can be.

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

Pick my little boy up, give him a tight hug, toss him up in the air and catch him.

 

* * * 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