04/20/2015:

Nome:  Jane

Età:  18 yrs. old

Paese:   United Stated

Sottotipo LGMD:  LGMD2i

 

A che età è stata fatta la diagnosi:

I was diagnosed when I was 5 years old.

Quali sono stati i primi sintomi:

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

Avete altri familiari affetti da LGMD:

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

Quali sono, secondo lei, le sfide più grandi da affrontare nella convivenza con la 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.

Qual è il suo più grande risultato:

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!

In che modo la LGMD l'ha influenzata nel diventare la persona che è oggi:

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

Cosa volete che il mondo sappia della LGMD?:

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

Se la vostra LGMD potesse essere "curata" domani, quale sarebbe la prima cosa che vorreste fare?:

I would run a race and jump for joy!