LGMD "ENTREVISTA EN PRIMER PLANO"

Nombre:  Fred   Edad: 36 yrs. old

País: Estados Unidos

Subtipo LGMD:  LGMD2A  / Calpainopathy

 

¿A qué edad le diagnosticaron:

Me lo diagnosticaron a los 13 años.

¿Cuáles fueron sus primeros síntomas?:

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.

¿Tiene otros familiares que padezcan LGMD?

No, soy el único.

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

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.

¿Cuál es su mayor logro?:

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.

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

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.

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

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

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

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

 

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