06/15/2015:

İsim:  Rinku    Yaş: 23

Ülke: INDIA

LGMD Alt Tipi:   Unknown

 

Kaç yaşında teşhis konuldu?:

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

İlk belirtileriniz neydi?:

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

LGMD hastası olan başka aile üyeleriniz var mı?

No, I am the only family member

LGMD ile yaşamanın en büyük zorluklarının ne olduğunu düşünüyorsunuz?:

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.

En büyük başarınız nedir?:

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

LGMD bugün olduğunuz kişi olmanızda sizi nasıl etkiledi?

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.

Dünyanın LGMD hakkında ne bilmesini istersiniz?:

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…

LGMD hastalığınız yarın "tedavi edilebilseydi", yapmak isteyeceğiniz ilk şey ne olurdu?:

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