LGMD "焦点访谈"

名称:  Dylan                                  年龄:  28 years old

国家:  United States of America

LGMD 子类型:  LGMD 2J / R10 Titin-related

您在几岁时被确诊: 

我在 23 岁时被确诊。

您最初的症状是什么？: 

I started noticing how “normal” things got increasingly difficult for me to do – walking up flights of stairs, standing up after sitting on the floor, jumping and squatting. I had constant muscle fatigue and would randomly fall. After I lost the ability to run and the falls became more frequent, we knew something was up.

您是否有其他家庭成员患有 LGMD： 

Nope. I am the one and only!

您认为 LGMD 患者在生活中面临的最大挑战是什么？:

It is a cruel disease because not only does it naturally take away our strength and mobility, it tries to take away our hope and our control over our own life. While our bodies deteriorate daily with no treatment or cure in sight, it is easy to feel defeated and neglected. I believe that to be one of its biggest challenges – keeping our head above water. That is why it is so especially important to stay positive and live life to YOUR best ability, no matter what that looks like!

您最大的成就是什么？:

I have been incredibly lucky and fortunate to be able to travel the country (44 states) playing music with some of the best guys in the world. Not sure how much longer I will be able to do that, but it has been a dream come true. I am also a proud graduate of Texas Christian University (Go Frogs) and I was a state champion in chess when I was a boy. I also think I am a rather good dog dad!

LGMD 是如何影响您成为今天的自己的？

It teaches me new things every single day. I have gained a lifetime’s amount of perspective in such a short time. I have become a better problem solver. I am much more patient with myself and others. I appreciate every moment and every single step that I have left. I smile more and look at the clouds and treat everyone gently now. Try to be someone’s hero. Besides suffering from LGMD, I am the luckiest man alive with the best family and friends anyone could ask for.

您希望世界了解 LGMD 的哪些方面？:

That we are people with goals, aspirations, passions, and feelings – just like everybody else. A lot of us were once pretty “normal” too. If everyone knew what hoops and hurdles had to be jumped through for someone with LGMD just to get through their normal daily routine, people would start to understand how tough and resilient our community is. They would realize that this is a community and disease worth fighting for. So be an advocate while researchers and scientists get these mysterious diseases figured out!

如果您的 LGMD 明天就能 "治愈"，您首先想做的是什么？:

I would run around in the yard with my dog, dance with a nice and pretty lady, play some baseball with my friends, and probably climb a mountain just because!

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： http://lgmd-info.org/spotlight-interviews