05/14/2016:

LGMD "焦点访谈"

名称:  Dave    年龄:  27 yrs. old

国家:澳大利亚

LGMD 子类型: LGMD 2A / Calpainopathy

 

您在几岁时被确诊:

I think I was diagnosed around the age of 14.  I know that it was while I was in high school.

您最初的症状是什么？:

I would go to golf every Saturday and when I would come home I would have to go and have a sleep for a few hours.   I would be sore all over.   So, my mother took me to the doctors to see why I was tired all the time.

您是否有其他家庭成员患有 LGMD：

I am the only member in my family who has any form of Muscular Dystrophy.

您认为 LGMD 患者在生活中面临的最大挑战是什么？:

The biggest problem I had was explaining my Muscular Dystrophy to people ( family, friends and strangers) and not have them completely believe me. They just thought I was tired because I was lazy.

I spent a night in hospital with massive cramps in my leg which I could not calm down. I could not walk properly for 3 weeks and still had to work in pain.   I’ve always had a problem with stairs and carrying heavy things for long periods of time.

您最大的成就是什么？:

My greatest accomplishment is getting married this February to my wife Rebecca.   She has become my strength and motivation to keep moving.  I am a second generation truck driver in Australia and it is something which I am very proud of!  Although, my job can sometimes become rather physical and it takes a toll on me.   My wife, Rebecca, helps me through it all.  She is my wonder woman.

LGMD 是如何影响您成为今天的自己的？

I have learned to listen to people about their condition. I have made a lot of great friends on Facebook who I keep in touch with. I listen to their concerns and problems and ask them for advise also. Most of all I have learned that it is okay to ask for help when I need it — instead of trying to do everything on my own.

您希望世界了解 LGMD 的哪些方面？:

I want the world to know that Limb Girdle Muscular Dystrophy exists!!!    It is incredible the amount of times I’ve had to explain my condition to people and they almost don’t believe me.   They don’t understand that my LGMD  cannot be fixed or cured by going to the gym.   There are no cures or treatments for LGMD.  We have no control over our condition, it is a part of us….a part which we struggle with but it is what makes us who we are.

如果您的 LGMD 明天就能 "治愈"，您首先想做的是什么？:

My personal goal apart from having a family….would be to play basketball again. I loved it growing up. I would definitely get back out onto the court and run for as long as I possibly could.

 

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