04/08/2016 – LGMD “Spotlight Interview”

NOMBRE:  Mary   Edad: 46

PAÍS: Estados Unidos

Subtipo LGMD: LGMD2A / Calpainopathy

 

¿A qué edad le diagnosticaron:

I was diagnosed with LGMD when I was 25 years old.

¿Cuáles fueron sus primeros síntomas?:

My first symptoms were being unable to rise from a seated position without placing weight on my arms for support and difficulty in climbing stairs.

¿Tiene otros familiares que padezcan LGMD?

No, I am the only family member to ever be diagnosed with LGMD.

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

The greatest challenges for me are trying to remain independent with daily activities.  The disease progression is slow but not being able to do what you once were able to do is hard to adjust to.

¿Cuál es su mayor logro?:

My greatest accomplishment was marrying my husband. I became a widow in 2014.  He was one of my greatest supporters.  He inspired me to be the best person I could be.  My family and friends are encouraging and a great support.

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

I take nothing for granted.  Each day is a gift – some better than others.  I became more outgoing once my mobility became limited as I still want to experience and be active in life despite my diagnosis.

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

LGMD is a muscle wasting disease.

Help those you can, become educated and treat everyone respectfully.

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

If a cure was found tomorrow, I would run, dance and jump!  All the things that I can no longer physically do would be top priorities!

 

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