LGMD "スポットライト・インタビュー"

名前    Adriana    年齢:  48 years old

国名:   Argentina

LGMDサブタイプ:  LGMD2B

 

WHAT AGE WERE YOU DIAGNOSED:

I was diagnosed at the age 20.

W最初の症状はどうでしたか？:

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

ご家族にLGMDの方がいらっしゃいますか？  

Yes, my brother also has LGMD.

WLGMDと共に生きる上で、最も困難だと思うことは何ですか？:

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.

Wあなたの最大の功績は？:

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.

LGMDは今のあなたにどのような影響を与えていますか？

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.

WLGMDについて世界に何を知ってもらいたいですか？:

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.

Iもし明日、あなたのLGMDが「治る」としたら、まず何をしたいですか？:

I would go skating again.

 

LGMDスポットライト・インタビュー "をもっと読みたい方、またはボランティアでインタビューに参加したい方は、ウェブサイトをご覧ください： https://www.lgmd-info.org/spotlight-interviews