08/27/2015

İsim:    Sabrina      YAŞ: 32

ÜLKE:  Bangladesh

LGMD Alt Tip:  LGMD 2D

 

Kaç yaşında teşhis konuldu? :

At the age of 9 years old, I was diagnosed.

İlk belirtileriniz neydi? :

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

LGMD hastası olan başka aile üyeleriniz var mı?

Yeah! My younger sister also has LGMD.

 

LGMD ile yaşamanın en büyük zorluklarının ne olduğunu düşünüyorsunuz?:

Living with LGMD the first challenges for me were social and infrastructure barriers. Like because of

Inaccessibility in our country I could not finish my studies. I could not go to weddings, family reunions, birthdays or anything of that sort. So I cut down socializing with others from childhood. I mostly grew up within the four walls of my house.

Furthermore, the physical challenges for me are that I can’t do anything on my own. I’m unable to move any part of my body, except my fingers, toes & head. I need help with practically everything so have to rely on someone else fully. Days passed and now my physical condition has become more critical. The biggest challenge for me physically at present is my breathing problem in spite of which I want to go ahead in my life with full passion.

En büyük başarınız nedir? :

My life had changed overnight when one day I came to know that my loving youngest sister has the same disease. I could visualize the same agonizing future for her that I was experiencing- this made me revolt. The rest of the world doesn’t show the same picture- why this situation of discrimination in our country? Why do they have to hear ‘no’ in the very beginning of life for everything? Even after being a part of this society they became to get distanced. With all these questions running over my head I became frustrated. Then a little change in mental frame work and I wrote a letter to the Prime Minister of my country in February’2008.

In April’2009 I got an opportunity to get in touch with the world through internet and Facebook which is an easy way to get people together. With the inspiration from a Facebook friend I tried to reach the letter to as many different people as possible and make them aware about the rights of Persons with Disabilities through advocacy. Thus started the journey of Bangladesh Society for the Change and Advocacy Nexus (B-SCAN), a voluntary organization on 17th July, 2009 in order to give the Persons with Disabilities a better life by creating network through advocacy for the system change in Bangladesh. I also started to write on blogs for raising awareness. I was nominated in the international blogging competition of German news broadcaster Deutsche Welle in 2011andachieved World’s second best position.

B-SCAN as a whole got tremendous response, many showed their concern. Our life inside the wall got changed. We started dreaming of campaigns for Rights & Awareness for the persons with disabilities throughout the country that will someday make people aware and concerned and thus will help the people with disabilities to get their rights.

Every morning when I get up, the first sight which captures my eyes is the open blue sky. I feel this earth is really beautiful, life is beautiful. I wish to touch the sky. I wish to stand up under the open sky and take a deep breath. I never thought that I would ever be able to do so, I only dreamt and wished. This wish, this will power used to give me strength, to inspire me to live a good life. And this will power only has made me dream of B-SCAN which I think is the greatest success of my life. B-SCAN is the motivation which has brought me out under the open sky.

LGMD bugün olduğunuz kişi olmanızda sizi nasıl etkiledi? :

When I was diagnosed with LGMD I never took it as a problem or anything of that sort. My life took a change when the same happened with my sister. When I saw her going through the same it was like a whole new picture, whole new perspective for me. It got me thinking about all the “Sabrinas” in this country, about their survival, their pain and misery. All these thoughts gave birth to a new Sabrina in me. As a person I became stronger.

I wish to change the perspectives of people and make it a suitable place for the Persons with Disabilities establishing their rights.

Dünyanın LGMD hakkında ne bilmesini istersiniz? :

Living with LGMD is not the end of life. Everyone should learn more and more about it. It can be done through studying every related website. Everyone should continue living freely and happily as ever before or even more. Try to enjoy every living moment there is to it. Doesn’t matter if still there’s no treatment. Frustration only makes your life a burden to yourself. Life is truly beautiful. If there is a problem, there must be a solution. We just have to look for it. Always stay positive.

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

My happiness will know no bounds because for the first time in forever I’ll be able to run out of the doors at the first drop of rain. Moreover, if I get cured then I’ll let everyone know about the treatment so that they can be cured the same way as me.