06/25/2015:

名称:  Rod   年龄: 65 Yrs. Old

国家:美国

LGMD 子类型: LGMD2L /  Anoctaminopathy

 

您在几岁时被确诊:

I was diagnosed at the age of 49.

您最初的症状是什么？:

My first symptoms included difficulty going up stairs and calf weakness.

您是否有其他家庭成员患有 LGMD：

不，我是唯一被诊断出患有 LGMD 的家庭成员。

您认为 LGMD 患者在生活中面临的最大挑战是什么？:

The greatest challenges that my LGMD2L presents are:  1)  reduced mobility and 2) not being able to participate in sports that I love such as surfing, snow skiing and water-skiing.

您最大的成就是什么？:

My greatest accomplishment are my two wonderful, mature and beautiful daughters!

LGMD 是如何影响您成为今天的自己的？

Living with LGMD has shown me the way to strength, patience and empathy.

您希望世界了解 LGMD 的哪些方面？:

I want the world to know that LGMD exists and what it is.  Most people have never heard of it.

如果您的 LGMD 明天就能 "治愈"，您首先想做的是什么？:

The first thing that I would do if my LGMD were cured tomorrow would be to go to Slick Rock country in Utah and go for a long hike…with some river fly fishing thrown in at the end!