06/15/2015:

名称:  Rinku    年龄: 23

国家: INDIA

LGMD 子类型:   Unknown

 

您在几岁时被确诊:

I was diagnosed at the age of 8 yrs. old.

您最初的症状是什么？:

I was falling frequently and had difficulty  with climbing stairs and running.

您是否有其他家庭成员患有 LGMD：

No, I am the only family member

您认为 LGMD 患者在生活中面临的最大挑战是什么？:

The greatest challenge for me is that LGMD is a progressive disease.  My muscles are getting weaker day by day and keeps getting worse.  My mind is not accepting it.   It is very difficult for me to lose my independence.

您最大的成就是什么？:

My friends and my family are my greatest and I never lose hope in any condition…that is my greatest accomplishment.

LGMD 是如何影响您成为今天的自己的？

Having LGMD has changed everything in my life.  My dreams, my future, my hopes… everything!  Other people think about their careers and I am only thinking about that how much longer I will be able to run, walk or even stand at all.    LGMD is not all bad.  I have learned many things from LGMD – ‘learn ground mode of disabled’.   If any treatment is discovered, I want to become normal.

您希望世界了解 LGMD 的哪些方面？:

The world?? First of all I personally do not know about the LGMD.  My doctors don’t know all about LGMD and about the different LGMD sub-types.

Unfortunately, every association or organization In India uses only the English language.   Where on other hand, people with any type of muscular dystrophy are not good in education or skilled in English so there is a very big problem in communication.

And I want that first government to help make doctors aware of muscular dystrophy and all the different types.   They need to open special research institutes for muscular dystrophy.   If the doctors can treat the LGMD, they may also become able to treat the old aged body the experiences weakness…

如果您的 LGMD 明天就能 "治愈"，您首先想做的是什么？:

If my LGMD was “cured” tomorrow….First, I would cry so much and then dance like a crazy person …