LGMD "焦点访谈"

名称：    Adriana    年龄:  48 years old

国家:   Argentina

LGMD 子类型: LGMD2B

 

WHAT AGE WERE YOU DIAGNOSED:

I was diagnosed at the age 20.

W您最初的症状是什么？:

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

您是否有其他家庭成员患有肺结核？  

Yes, my brother also has LGMD.

W您认为患有老年痴呆症的最大挑战是什么？:

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.

WHAT IS YOUR GREATEST ACCOMPLISHMENT:

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 是如何影响你成为今天的自己的？

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.

W您希望世界了解 LGMD 吗？:

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如果你的老年痴呆症明天就能 "治愈"，你首先想做的是什么？:

I would go skating again.

 

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