04/20/2015:

이름:  Jane

나이:  18 yrs. old

국가:   United Stated

LGMD 하위 유형:  LGMD2i

 

몇 살에 진단받으셨나요?:

I was diagnosed when I was 5 years old.

첫 증상은 무엇이었나요?:

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

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요?

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

LGMD와 함께 생활하면서 가장 어려운 점은 무엇인가요?:

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.

가장 큰 성과는 무엇인가요?:

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!

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?

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

LGMD에 대해 전 세계에 알리고 싶은 내용:

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

내일 LGMD가 "완치"될 수 있다면 가장 먼저 하고 싶은 일은 무엇인가요?:

I would run a race and jump for joy!