06/15/2015:

이름:  Rinku    나이: 23

국가: INDIA

LGMD 하위 유형:   Unknown

 

몇 살에 진단받으셨나요?:

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

첫 증상은 무엇이었나요?:

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

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요?

No, I am the only family member

LGMD와 함께 생활하면서 가장 어려운 점은 무엇인가요?:

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.

가장 큰 성과는 무엇인가요?:

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

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?

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.

LGMD에 대해 전 세계에 알리고 싶은 내용:

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…

내일 LGMD가 "완치"될 수 있다면 가장 먼저 하고 싶은 일은 무엇인가요?:

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