LGMD "焦点访谈"

NAME: Mackenzie   年龄: 22 yrs. old

国家: USA

LGMD 子类型： Unknown

你是几岁被诊断出来的？

I was just diagnosed last year at the age of 21.

你最初的症状是什么？

My first symptoms included my feet and legs aching, sliding my feet when walking, fatigue and having a hard time lifting objects that should be easy to lift for a person of my age/height.

您是否有其他家庭成员患有肺结核？

No, I am the only one.

您认为患有 LGMD 的最大挑战是什么？

The simplest things can make my body ache (cleaning, trying on clothes, shopping, etc). Constant fatigue is always a struggle. I’m learning to prioritize my daily activities and accept that I can’t always do what I want to do.

您最大的成就是什么:

I am finishing college to be an elementary/special education teacher.

lgmd 是如何影响你成为今天的自己的？

My diagnosis has been less than a year ago, but I have noticed that reaching my goals are more important to me. I also got engaged this year, and I am so happy that we were together before the diagnosis and he still asked me to marry him! I still have goals.

您想让世界了解 LGMD 的哪些方面？

I want the world to know that we are not lazy. We wish we could be more active. Every day we think about what we want to do but don’t have the energy or pain tolerance to do. I want the world to know that we are people with hopes and dreams, just like them.

如果明天就能 "治愈 "你的老年痴呆症，你首先想做的是什么？

If LGMD was cured tomorrow, I would want to live without pain and have the energy a 22-year-old should have!

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