LGMD "焦点访谈"  

名称: Becky   年龄:  35 yrs. old

国家： USA

LGMD 子类型: LGMD2B

 

你是几岁被诊断出来的？

I was diagnosed in 2009 at the age of 27.

你最初的症状是什么？

My first symptoms were difficulty walking up steps, getting up from the ground or getting up from a seat/toilet.

您是否有其他家庭成员患有肺结核？

No other family members have LGMD.

您认为患有 LGMD 的最大挑战是什么？

The biggest challenge for me is the mental part of understanding my limitations. Knowing that my life is not the way I had ever imagined it would be. Knowing the things my husband and I had to change in order to cope and deal with this continuously progressing disease.

你最大的成就是什么？

I think my greatest accomplishment after being diagnosed with this disease is my marriage. We got married 2 months before I started having all of the tests to determine what was wrong. In sickness and in health came a lot sooner than we could have ever imagined, but we are stronger today because of it.

lgmd 是如何影响你成为今天的自己的？

This disease is life-changing. Despite how dependent I am on my family and friends I am still fairly independent. I drive with hand controls, I am resourceful in the ways that I find to keep doing things for myself, and in a way, even though my muscles are weaker, I am stronger. This didn’t happen all at once. It took time to realize that I am a strong person even though my muscles are weak.

您想让世界了解 LGMD 的哪些方面？

I want the world to know and understand that this disease is so challenging. Sometimes my brain doesn’t remember that I can’t do something and I will just start to do it only to realize I can’t. I want them to know that from the moment someone with LGMD wakes up they have to immediately think about how they are going to tackle the day. The world should know that this disease, while somewhat invisible, is real and is extremely difficult to deal with. That just because someone is out and about with this disease does not mean that they are OK or cured. We still have to live our lives, even if behind our smile we are exhausted or hurting. The world should also know that THERE WILL BE A CURE. There are so many people working on this and the strides made in just the few short years I’ve been diagnosed have been huge.

如果明天就能 "治愈 "你的老年痴呆症，你首先想做的是什么？

This list is LONG….but first I would run. My legs haven’t moved that way in such a long time.

 

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