LGMD "ENTREVISTA EN PRIMER PLANO"

Nombre:  Rodrigo  Edad29 años  

País: Estados Unidos

Subtipo LGMD:  LGMD2B / Myoshi Miopatía

¿A qué edad le diagnosticaron:

I was diagnosed with LGMD2B at the age of 24.

¿Cuáles fueron sus primeros síntomas?:

My symptoms appeared around the age of 17.

¿Tiene otros familiares que padezcan LGMD?

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

¿Cuáles crees que son los mayores retos de vivir con LGMD?:

Mobility is my greatest challenge.

¿Cuál es su mayor logro?:

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

¿Cómo le ha influido la LGMD para convertirse en la persona que es hoy?

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.

¿Qué quiere que el mundo sepa sobre la LGMD?:

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.

Si su LGMD pudiera "curarse" mañana, ¿qué sería lo primero que desearía hacer?:

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.

 

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