LGMD "スポットライト・インタビュー"

名称:  Keisha  年齢: 31 yrs. old

国名:アメリカ

LGMDサブタイプ : Unknown

 

何歳で診断を受けたか:

I was diagnosed about 5 years ago at the age of 25-26.

最初の症状は？:

I noticed that I was repeatedly falling and that my leg would give out without any warning.  I also recall that I was unable to raise my right arm unless I had assistance.

ご家族にLGMDの方はいらっしゃいますか？

So far, no one in my family has muscular dystrophy but I plan to have my parents tested to see if they are carriers.

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？:

One of the greatest challenges is always having to plan ahead – if going out with friends or family to make sure the place is handicapped accessible.  Every day it also takes me longer to get dressed in the morning.

あなたの最大の功績は何ですか？:

Coming to the fact that I have LGMD and still trying to figure out which form of LGMD.  And learning to embrace it.

LGMDは今のあなたにどのような影響を与えていますか？

I feel LGMD has made me an unique individual helped me to bring awareness of the disease to others that don’t know much about it.  Having LGMD has helped me to become stronger and more independent.  I know that having LGMD is a part of me, I am human and still have my days just like anyone else.  I am a strong and proud woman with LGMD.

LGMDについて世界に知ってもらいたいことは？:

LGMD is something that currently has no cure.  It is something that won’t go away.  Physical therapy and aquatic therapy help manage the disease.  Even with LGMD, we are still strong and can live a normal life just like anyone else.

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？:

If I could be cured tomorrow, I would want to run a marathon, run up and down the stairs, and take a big vacation somewhere to celebrate!

 

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