05/21/2015:

 

이름:  Andrea                 나이: 17 yrs. old

국가: Norway

LGMD 하위 유형: LGMD 1B / Laminopathy

몇 살에 진단받으셨나요?:

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.

첫 증상은 무엇이었나요?:

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

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요?

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.

LGMD와 함께 생활하면서 가장 어려운 점은 무엇인가요?:

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.

가장 큰 성과는 무엇인가요?:

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

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?

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

LGMD에 대해 전 세계에 알리고 싶은 내용:

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.

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

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