06/15/2015:

Имя:  Rinku    Возраст: 23

Страна: INDIA

LGMD Подтип:   Unknown

 

В каком возрасте вам был поставлен диагноз:

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

Каковы были ваши первые симптомы:

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

Есть ли у вас другие члены семьи, страдающие LGMD:

No, I am the only family member

Что, по вашему мнению, является наибольшей проблемой в жизни с 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.

Какое ваше самое большое достижение:

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

Как LGMD повлиял на то, что вы стали тем человеком, которым являетесь сегодня:

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.

Что вы хотите, чтобы мир узнал о 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…

Если бы ваш LGMD можно было "вылечить" завтра, что бы вы хотели сделать в первую очередь:

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