06/15/2015:

Nome:  Rinku    Idade: 23

País: INDIA

LGMD Sub-tipo:   Unknown

 

Com que idade foi diagnosticado:

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

Quais foram os seus primeiros sintomas:

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

Tem outros familiares que sofrem de LGMD:

No, I am the only family member

Quais são, na sua opinião, os maiores desafios de viver com a 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.

Qual é a sua maior realização:

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

Como é que a LGMD o influenciou a tornar-se a pessoa que é hoje?

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.

O que quer que o mundo saiba sobre a 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…

Se a sua LGMD pudesse ser "curada" amanhã, qual seria a primeira coisa que gostaria de fazer?:

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