06/15/2015:

الاسم:  Rinku    العمر: 23

البلد: INDIA

النوع الفرعي LGMD:   Unknown

 

في أي عمر تم تشخيصك:

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

ما هي أعراضك الأولى:

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

هل لديك أفراد آخرون من عائلتك مصابون بداء تضخم الغدد اللمفاوية الجنيني:

No, I am the only family member

ما هي في رأيك أكبر التحديات التي تواجهك في التعايش مع داء الليثيوم المتعدد الكيسات؟:

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.

ما هو أعظم إنجازاتك:

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

كيف أثرت عليك LGMD لتصبح الشخص الذي أنت عليه اليوم:

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.

ما الذي تريد أن يعرفه العالم عن 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…

إذا كان من الممكن "علاج" مرضك بالتهاب الغدد اللمفاوية الروماتيزمية غدًا، فما هو أول شيء تريد القيام به:

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