04/20/2015:

Nombre:  Jane

Edad:  18 yrs. old

País:   United Stated

Subtipo LGMD:  LGMD2i

 

¿A qué edad le diagnosticaron:

I was diagnosed when I was 5 years old.

¿Cuáles fueron sus primeros síntomas?:

I was experiencing difficult climbing stairs and keeping up with my peers on the playground.

¿Tiene otros familiares que padezcan LGMD?

No, I am the only person in my family with limb girdle muscular dystrophy.

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

I find that it is difficult searching for accessible paths when in an unfamiliar setting.   It can also be challenging to have to pace myself – more than my friend.

¿Cuál es su mayor logro?:

I suffered a major accident in October, 2014.  My greatest accomplishment is working so hard to walk independently again.  I was told no weight bearing on my legs while in the hospital for a month.  But, after several consultations with multiple doctors, they reversed the orders.  I worked hard every day to be able to walk out of the hospital on my own, one month later!

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

It has taught me to think outside the box – to be creative and original.

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

Just because one is physically disabled doesn’t mean you are mentally disabled.

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

I would run a race and jump for joy!