患有 LGMD 的个人: Lori

LGMD "焦点访谈"

 

名称:  Lori  年龄: 47 yrs. old

国家:美国

LGMD 子类型:LGMD2i

您在几岁时被确诊:

I was diagnosed at the age of 41.

您最初的症状是什么?:

The first symptoms that I noticed were muscle weakness and falling although at the time I didn’t realize that they were anything serious.

您是否有其他家庭成员患有 LGMD:

Yes, my younger sister also has LGMD2i.

您认为 LGMD 患者在生活中面临的最大挑战是什么?:

My greatest challenge is lacking the energy and physical strength to do everything I used to do and everything I want to do.

您最大的成就是什么?:

My greatest accomplishments are raising my two sons (ages 17 and 24) and becoming an attorney.

LGMD 是如何影响您成为今天的自己的?

Having LGMD causes me to be more grateful for what I can do and for the people in my life.

您希望世界了解 LGMD 的哪些方面?:

I would like people to know that LGMD is a genetic disease for which there is no treatment or cure at this time.

如果您的 LGMD 明天就能 "治愈",您首先想做的是什么?:

If I was cured tomorrow, I would like to go hiking or for a long walk.

 

* * * 欲了解更多 "LGMD 聚焦访谈",或自愿参加即将举行的访谈,请访问我们的网站 at: https://www.lgmd-info.org/spotlight-interviews