LGMD "焦点访谈"

名称:  Andrea  年龄: 24 yrs. old

国家:美国

LGMD 子类型:  LGMD2A – a form of Calpainopathy

您在几岁时被确诊:

I was diagnosed at the age of 11.

您最初的症状是什么？:

At age 8, I could not stand with my heels on the ground and began toe walking shortly thereafter. Weakness in my shoulders and hips followed.

您是否有其他家庭成员患有 LGMD：

No, I am the only family member diagnosed with LGMD.

您认为在与 LGMD 最大的挑战是什么？:

Not being able to use Uber!

The progressive nature of the disease is challenging. I’ve had to adjust to the loss of certain abilities over time, and it’s difficult knowing that these losses will continue. For example, I could walk as a child, I used a Segway to get around during my teenage years, and now I use a wheelchair. For me, the most difficult adjustments have been no longer being able to visit friends’ homes because they nearly always have steps, and no longer being able to play musical instruments I once enjoyed.

您最大的成就是什么？:

I feel fortunate that I found an area of study in college that I am passionate about and can pursue with LGMD. I’m proud of myself for moving to a new state for graduate school in biostatistics and living independently. But of course several people have helped me along the way (love you mom and dad :).

LGMD 是如何影响你成为今天的 成为今天的你：

Sometimes life gives you challenges that you can’t change, but the process of dealing with those challenges can often be very rewarding. Living with LGMD has made me a stronger person in many ways despite physical weakness. It has also taught me the value of vulnerability and embracing sadness to fully experience joy. Actually maybe the movie “Inside Out” taught me that…

您希望世界了解 LGMD 的哪些方面？:

Everyone should watch Stella Young’s TED Talk titled “I am not your inspiration, thank you very much.” She shares a great message about the exploitation of persons with disabilities. I believe that the vast majority of us on this earth are doing the best we can despite the various traumas we’ve endured. For those of us with physical disabilities, that trauma is just a little more obvious to the naked eye.

如果您的 LGMD 明天就能 "治愈"，您首先想做的是什么？ 您想做的第一件事是什么？:

This question is the most difficult for me. I’ve never really been jealous of people running, hiking, or going to the gym. I’d probably just go to school but use the stairs instead of the elevator. But that’s a boring answer. Maybe I’d be more dramatic; I could sell my wheelchair and use the money to take my family to Europe. Being able to use the restroom on an airplane could be exciting. But I’d miss the special treatment that comes with using a wheelchair. Being different has its perks.

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