04/20/2015:

名称:  Jane

年龄:  18 yrs. old

国家:   United Stated

LGMD 子类型:  LGMD2i

 

您在几岁时被确诊:

I was diagnosed when I was 5 years old.

您最初的症状是什么？:

I was experiencing difficult climbing stairs and keeping up with my peers on the playground.

您是否有其他家庭成员患有 LGMD：

No, I am the only person in my family with limb girdle muscular dystrophy.

您认为 LGMD 患者在生活中面临的最大挑战是什么？:

I find that it is difficult searching for accessible paths when in an unfamiliar setting.   It can also be challenging to have to pace myself – more than my friend.

您最大的成就是什么？:

I suffered a major accident in October, 2014.  My greatest accomplishment is working so hard to walk independently again.  I was told no weight bearing on my legs while in the hospital for a month.  But, after several consultations with multiple doctors, they reversed the orders.  I worked hard every day to be able to walk out of the hospital on my own, one month later!

LGMD 是如何影响您成为今天的自己的？

It has taught me to think outside the box – to be creative and original.

您希望世界了解 LGMD 的哪些方面？:

Just because one is physically disabled doesn’t mean you are mentally disabled.

如果您的 LGMD 明天就能 "治愈"，您首先想做的是什么？:

I would run a race and jump for joy!