06/15/2015:

Nazwa:  Rinku    Wiek: 23

Kraj: INDIA

Podtyp LGMD:   Unknown

 

W jakim wieku zostałeś zdiagnozowany?:

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

Jakie były pierwsze objawy?:

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

Czy masz innych członków rodziny cierpiących na LGMD?

No, I am the only family member

Co uważasz za największe wyzwanie w życiu z LGMD?:

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.

Jakie jest twoje największe osiągnięcie?:

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

Jak LGMD wpłynęło na to, że stałeś się osobą, którą jesteś dzisiaj:

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.

Co chciałbyś, aby świat dowiedział się o LGMD?:

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…

Gdyby jutro można było "wyleczyć" chorobę LGMD, co byłoby pierwszą rzeczą, którą chciałbyś zrobić?:

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