INDIVÍDUO COM LGMD: Joana

04/20/2015:

Nome:  Jane

Idade:  18 yrs. old

LGMD2i - Jane

País:   United Stated

LGMD Sub-tipo:  LGMD2i

 

Com que idade foi diagnosticado:

I was diagnosed when I was 5 years old.

Quais foram os seus primeiros sintomas:

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

Tem outros familiares que sofrem de LGMD:

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

Quais são, na sua opinião, os maiores desafios de viver com a 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 é a sua maior realização:

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!

Como é que a LGMD o influenciou a tornar-se a pessoa que é hoje?

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

O que quer que o mundo saiba sobre a LGMD:

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

Se a sua LGMD pudesse ser "curada" amanhã, qual seria a primeira coisa que gostaria de fazer?:

I would run a race and jump for joy!