LGMD "焦点访谈"

名称:      Hasan          年龄:   34 years old

国家:  Pakistan

LGMD 子类型: Unknown

您在几岁时被确诊:

I was diagnosed at the age of 19 years old

您最初的症状是什么？:

Started feeling pain and cramps, wadding walk, spinal curvature ….

您是否有其他家庭成员患有 LGMD：

Yes, two sisters and one brother having this condition too

您认为在与 LGMD 最大的挑战是什么？:

Well, loosing independent life I think is the biggest challenges in my life. The main thing is that my country places are mostly not wheelchair friendly and people always think that I have polio. Still, I do think about old days when I used to do lots of things are now unable to do that really sucks to me.

People don’t understand your needs and requirements in my daily course of life. Therefore, we have to guide them.

您最大的成就是什么？:

In my point of view, I got a dream job now which I want to do in my life and now I love my job so much. I have started symptoms almost near to the completion of my studies. So, I think this is one the accomplishment in my life.

LGMD 是如何影响你成为今天的 成为今天的你：

To be honestly speaking, it made me so much changed my entire life. I learnt a lot after diagnosis of this condition and have to accept it. One of the main elements in my life now is to have patient.

您希望世界了解 LGMD 的哪些方面？:

Please try to understand our disease instead of judging us. Life is beautiful and we come once only. So, enjoy every day and don’t feel bad or down about you for what you’re.

Don’t hesitate to ask questions about us.

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？:

I want to go and see my immediate family members to surprise them that I can start walking again.

To read more “LGMD Spotlight Interviews” or to volunteer to be featured in an upcoming interview, please visit our website at: https://www.lgmd-info.org/spotlight-interviews