LGMD "焦点访谈"

名称:  Keisha  年龄: 31 yrs. old

国家:美国

LGMD 子类型 : Unknown

 

您在几岁时被确诊:

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

您最初的症状是什么？:

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.

您是否有其他家庭成员患有 LGMD：

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

您认为 LGMD 患者在生活中面临的最大挑战是什么？:

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.

您最大的成就是什么？:

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

LGMD 是如何影响您成为今天的自己的？

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.

您希望世界了解 LGMD 的哪些方面？:

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.

如果您的 LGMD 明天就能 "治愈"，您首先想做的是什么？:

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!

 

如需阅读更多 "LGMD 焦点访谈"，或自愿参加即将举行的访谈，请访问我们的网站： https://www.lgmd-info.org/spotlight-interviews