12/10/2015

姓名:  Michal   年龄: 35 yrs. old

国家: Poland

LGMD 子类型: Unknown

 

您在几岁时被确诊:

I was diagnosed when I was 25 years old.

您最初的症状是什么？:

When I was a baby, my neck muscles were too weak and I had difficulty holding my head up.  I was delayed and didn’t start to walk until I was 4year old.  I stopped walking at the age of 14.

您是否有其他家庭成员患有 LGMD：

NO , I’m the only person in my family who has this disease.

您认为 LGMD 患者在生活中面临的最大挑战是什么？: For me the greatest challenge is that I cannot do some things such as walking, running. stand without help, get dressed, etc.   I tried to control my activities so that I have enough energy to do the activities that I want to do.

您最大的成就是什么？:

One of the biggest achievement in my life is that I have real great parents, friends, and colleagues who encourage me to live a fairly optimistic life and let me forget about my disability.

LGMD 是如何影响您成为今天的自己的？

I have become more insensitive to pain and I’m not fearful of any challenges

您希望世界了解 LGMD 的哪些方面？:

I want the world to know that people with LGMD may need more help to live independently – such as a personal care attendant,  improved access to adaptive and assistive equipment as well as medicines.  A cure and treatment is needed to treat all the LGMD patients.

如果您的 LGMD 明天就能 "治愈"，您首先想做的是什么？:

I think if I were cure tomorrow, I would run and do everything I never could do!

 

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