LGMD “Spotlight Interview”

名称:  Aric   年龄:  22 yrs. old

国家: 美国

LGMD Sub-Type:  LGMD2B

 

您在几岁时被确诊:

我在 21 岁时被确诊。

您最初的症状是什么？:

My first symptoms were not being able to climb stairs or stand on my tip toes.

您是否有其他家庭成员患有 LGMD：

我没有。

您认为 LGMD 患者在生活中面临的最大挑战是什么？:

In my normal day, I have trouble walking up stairs and getting out of my car —  things that most people would never think about. That’s the biggest challenge I think, trying to help people better understand what people like me are going through. It’s tough to describe why I can’t do normal everyday activities like I used to.

您最大的成就是什么？:

I’ve had accomplishments in sports along with academics over the past few years while I was in high school. In the few jobs I’ve worked I’ve reach goals that no other young person has ever came close to. I honestly think my biggest accomplishment is not giving up the fight I’m currently in. This horrible disease can really take so much out of one person, the strength and message I must tell myself every day just to get out of bed is my biggest accomplishment. I will continue to fight for a better life for me and for others living with MD, I’m still very young I believe I can now make a difference in this world.

LGMD 是如何影响您成为今天的自己的？

LGMD has turned me into such a stronger person and the irony in the statement is kind of funny. I treat every day like a blessing, I’ve recently started my own team for a local MD event and I am currently working on my own event! I just want to make a better place and provide hope for every child and adult going through this.

您希望世界了解 LGMD 的哪些方面？:

I just want the world to know the struggle that we go through, how hard it can be just to continue going on with everyday life. I want the world to know.

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’d honestly just talk off running, I’d invite all my family and friends and we would just run as far as we could like Forest Gump. We’d all just laugh and cry all the way. The world would definitely know that I was a cured man!

 

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