LGMD "스포트라이트 인터뷰"

이름:    Adriana    나이:  48 years old

국가:   Argentina

LGMD 하위 유형: LGMD2B

 

WHAT AGE WERE YOU DIAGNOSED:

I was diagnosed at the age 20.

W모자가 첫 증상이었나요?:

My first symptoms included: difficulty climbing stairs, tiredness, and some falls.

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요?  

Yes, my brother also has LGMD.

WLGMD와 함께 생활하면서 가장 큰 어려움은 무엇이라고 생각하십니까?:

In the beginning the greatest challenge was the process of accepting the disease. Given that I am a very independent person with a very active life, today my biggest challenge is making my desires compatible with what is possible, and finding strategies that permit me to reach my goals, understand my limits, and find solutions.

W모자는 당신의 가장 큰 업적입니다:

Being able to overcome the obstacles I was facing, being a mother, being surrounded by my loved ones, and working every day at something I like.  Working in an NGO for neuromuscular diseases, ADM Argentina, of which I was its president in 2011 and 2016.

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?

I had to redefine my projections for my future and in what fields I wanted to work, that was a big challenge. But it was possible, I was able to grow as a person, to live my daily life with more interest, to value what life has offered me, and to try to help other who are going through similar situations.

W전 세계가 LGMD에 대해 알았으면 하는 것:

I would like the whole world to know about the existence of LGMD, its possible treatments, above all fight for early detection to improve our quality of life.  Support diagnosis and research.

I만약 당신의 LGMD가 내일 "완치"될 수 있다면, 가장 먼저 하고 싶은 일은 무엇일까요?:

I would go skating again.

 

더 많은 'LGMD 스포트라이트 인터뷰'를 읽거나 다음 인터뷰에 출연을 신청하려면 다음 웹사이트를 방문하세요: https://www.lgmd-info.org/spotlight-interviews