04/20/2015:

名称:  Jane

年齢:  18 yrs. old

国名:   United Stated

LGMDサブタイプ:  LGMD2i

 

何歳で診断を受けたか:

I was diagnosed when I was 5 years old.

最初の症状は？:

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

ご家族にLGMDの方はいらっしゃいますか？

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

LGMDと共に生きていく上で、最も困難だと感じることは何ですか？:

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.

あなたの最大の功績は何ですか？:

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は今のあなたにどのような影響を与えていますか？

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

LGMDについて世界に知ってもらいたいことは？:

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

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 run a race and jump for joy!