LGMD “SPOTLIGHT INTERVIEW”
Country: Syria / Germany
LGMD Sub-type: LGMD2C
AT WHAT AGE WERE YOU DIAGNOSED:
I was diagnosed at age 8.
WHAT WERE YOUR FIRST SYMPTOMS:
The symptoms began to appear when I was 7 years old. As a young child, I walked on my toes.
DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD:
Yes, my brother and two of my uncles (my mother’s brothers) also have been diagnosed with LGMD2C. (My brother still lives in Syria and his name is Younis. He was previously featured in an LGMD Spotlight Interview.)
WHAT DO YOU FIND TO BE THE GREATEST CHALLENGES IN LIVING WITH LGMD:
The greatest challenge for me is walking and standing for long periods. I can walk for 500 meters using a stick. I also use a wheelchair and in the bathroom, there are some difficulties. Sometimes I do some daily tasks on my own.
I now live in Germany with my uncle and I have not seen my parents and brothers for two years. I think it’s hard to live alone on my own… far from my family, brothers and country.
WHAT IS YOUR GREATEST ACCOMPLISHMENT:
The truth is I do not know what is the greatest achievement for me. But I am proud that I can still walk and practice some exercise.
Despite the conditions of war and displacement in Syria, I managed to pass high school successfully and 10 years ago I learned to swim.
But the biggest challenge I have made is the journey of refuge from Syria to Germany through 9 countries. Within 10 days I cannot describe the difficulties that were encountered on a road. In a forest in Serbia, I traveled 5 kilometers and did not have a wheelchair at that time except for the sinking of our boat in front of Greek Islands I do not know how I survived the drowning.
Now I learn the German language and after I finish, I will complete my university studies.
HOW HAS LGMD INFLUENCED YOU INTO BECOMING THE PERSON YOU ARE TODAY:
LGMD has taught me to be a patient and kind human being. A person can do whatever he wants whatever his circumstances. It is tough but also taught me to show will and determination.
WHAT DO YOU WANT THE WORLD TO KNOW ABOUT LGMD:
I want the world to know more about this disease and all of the different types of LGMD. Plus, I want people to know that more research focused on LGMD is vital to help find a cure and treatment for these diseases. I hope that scientists will find a cure for this disease. I also want people to take steps to prevent it.
IF YOUR LGMD COULD BE “CURED” TOMORROW, WHAT WOULD BE THE FIRST THING THAT YOU WOULD WANT TO DO:
The first thing I will do is go to the swimming pool and jump from a high place. Plus running fast and playing football with my brother, Younis.
* * * To read more “LGMD Spotlight Interviews” or to volunteer to be featured in an upcoming interview, please visit our website at https://lgmd-info.org/spotlight-interviews
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