LGMD "SPOTLIGHT INTERVIEW"

Name:  Rodrigo  Alter: 29 yrs. old  

Land: Vereinigte Staaten

LGMD Unter-Typ:  LGMD2B / Myoshi Myopathie

In welchem Alter wurde bei Ihnen die Diagnose gestellt?:

I was diagnosed with LGMD2B at the age of 24.

Was waren Ihre ersten Symptome?:

My symptoms appeared around the age of 17.

Haben Sie andere Familienmitglieder, die LGMD haben?

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

Was sind für Sie die größten Herausforderungen im Leben mit LGMD?:

Mobility is my greatest challenge.

Was ist Ihre größte Errungenschaft?:

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

Wie hat LGMD Sie zu der Person gemacht, die Sie heute sind?

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.

Was möchten Sie der Welt über LGMD mitteilen?:

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.

Wenn Ihre LGMD morgen "geheilt" werden könnte, was würden Sie als Erstes tun wollen?:

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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