患有 LGMD 的个人: 巴克

 

名称:       Buck

年龄:           31 years old

国家:   Unites States of America

LGMD 子类型:  LGMD 2L / R12

 

您在几岁时被确诊?

I was diagnosed at the age of 28.

您最初的症状是什么?

My initials symptoms included weakness and pain in my legs, difficulty climbing stairs and it was hard to stand up from the ground.

您有其他家庭成员患有 LGMD 吗?

I do not have any known relatives that have been diagnosed with LGMD.

您认为 LGMD 患者在生活中面临的最大挑战是什么??

Chronic pain is my greatest challenge with LGMD.

您最大的成就是什么?

I am still working on my greatest accomplishment but for now I have three beautiful children that I am focusing on.

LGMD 是如何影响您成为今天的自己的?

I have always had a great work ethic, always able to accomplish what I put my mind to.  Because of my disability, things are hard to get done but I never give up.  I have been able to stay positive and encouraging to others.

您希望世界了解 LGMD 的哪些方面??

I want the world to know that this disease is life changing and it can be extremely hard at times.  Unfortunately, there isn’t a lot of support for LGMD.  Hopefully raising awareness can lead to better support for people living with this disease.

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 go to a trampoline park with my kids!  It is the small things in life that I cherish now.