05/21/2015:

 

Nombre:  Andrea                 Edad: 17 yrs. old

País: Norway

Subtipo LGMD: LGMD 1B / Laminopathy

¿A qué edad le diagnosticaron:

I was about 6 months old when they discovered that something was wrong, but it wasn’t until I was about 2 years old that they decided it was muscle dystrophy. I have probably had the disease my whole life. I was 7 years old when I got the diagnosis LGMD 1B.

¿Cuáles fueron sus primeros síntomas?:

I couldn’t hold my head up when I started sitting on my own.

¿Tiene otros familiares que padezcan LGMD?

No, I am the only one with LGMD in my family. Both my parents have been tested and the results showed that I didn’t inherit it, it was from a mutation.

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

The greatest challenges are that I can’t do anything on my own. I need help with practically everything, like getting dressed, getting in and out of bed, and picking up stuff.

¿Cuál es su mayor logro?:

My greatest accomplishment is my mind. How I have a positive look on everything.

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

It has made me appreciate the small pleasures and made me a very positive person.

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

I want the world to know that I am not chained to my wheelchair, the wheelchair is the most helpful aid I have. Without it I would be chained, it is my freedom. When some people see me they only see the wheelchair, the noise around me, and not me. The disease only affects my muscles and not my brain, I am a normal 17-year-old girl.

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

I would jump, run up and down the stairs, pick up things, do all the normal things I never have been able to do!