LGMD "SPOT IŞIĞI RÖPORTAJI"

İsim:  Rodrigo  Yaş: 29 yrs. old  

Ülke: Birleşik Devletler

LGMD Alt Tip:  LGMD2B / Myoshi Miyopati

Kaç yaşında teşhis konuldu?:

I was diagnosed with LGMD2B at the age of 24.

İlk belirtileriniz neydi?:

My symptoms appeared around the age of 17.

LGMD hastası olan başka aile üyeleriniz var mı?

I have 2 brothers who show symptoms but have not been diagnosed.

LGMD ile yaşamanın en büyük zorluklarının ne olduğunu düşünüyorsunuz?:

Mobility is my greatest challenge.

En büyük başarınız nedir?:

My greatest accomplishment is in allowing my artistic talent to come to light.

LGMD bugün olduğunuz kişi olmanızda sizi nasıl etkiledi?

LGMD has greatly influenced me into becoming the person that I am today.  It has allowed me to see life in a completely different way.  It has forced me to push myself constantly, even for the smallest of tasks, which in turn made me become resilient and persistent.  It has also given me the empathy and I can sympathize with those who are struggling too.  LGMD has made me appreciate every aspect of life and discard the materialistic behavior.

Dünyanın LGMD hakkında ne bilmesini istersiniz?:

The world, first of all, needs to know we exist.  Limb Girdle Muscular Dystrophy can and will be cured but not enough people know about it to care.  It is a good thing it affects a small percentage of the population but we are a relatively large group of people who want to still make it in life.  We are also pursuing happiness but need a lot more help from others.  The world needs to know we are still contributing what we can.  We struggle, even minute even putting a piece of bread in our mouth, but we have accepted these challenges and being strong has become our only way of life.

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

I would take the fastest route to recovery.  I would take off running as Forest Gump did.  I would tell everyone on my path how much I appreciate moving again in an attempt to bring self-awareness of general health and point out how much we take for granted.  Every step a healthy person takes for granted a person with Muscular Dystrophy wishes they could take.

 

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