LGMD "焦点访谈"

名称:  Scott  年龄: 48 yrs. old

国家: 美国

LGMD 子类型:  LGMD 2L – also known as Anoctaminopathy

 

您在几岁时被确诊:

Although my MD began about 15 years ago, I was finally diagnosed recently with limb-girdle MD Type 2L. Until now, I was only informed by doctors that it was LGMD.

您最初的症状是什么？:

I began having difficulty climbing stairs and running.

您是否有其他家庭成员患有 LGMD：

没有

您认为 LGMD 患者在生活中面临的最大挑战是什么？:

I have always been an independent person.  Since I am an only child, I always did things on my own. Lately, I have had to rely more and more on family and friends.  Also, it drives me nuts as to how long it takes me to do things now.

您最大的成就是什么？:

I am proud to have completed college and earned my degree.

Also, I am happy to have worked 30 years for the same company before having to resign due my struggling with MD.

LGMD 是如何影响您成为今天的自己的？

I am still trying to develop patience. I take pride in accomplishing tasks that once I took for granted.

您希望世界了解 LGMD 的哪些方面？:

Please continue to support local and national MD charities whether it be financially or volunteering time to those in need. It is greatly appreciated.

如果您的 LGMD 明天就能 "治愈"，您首先想做的是什么？:

Walk unassisted down by the ocean at one of my local beaches.

 

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