NAME:  Younis  AGE:  14 yrs. old
COUNTRY:  Syria
LGMD SUB-TYPE:  LGMD 2C

At what age were you diagnosed:

I was diagnosed at age 7.

What were your first symptoms:

The symptoms began to appear when I was 5 years old.  As a young child, I walked on my toes.

Do you have other family members who have LGMD:

Yes, my older brother and two of my uncles (my mother’s brothers) also have been diagnosed with LGMD2C.  (My oldest brother has immigrated to Germany.)

What do you find to be the greatest challenges in living with LGMD:

For me, right now the greatest challenges are running, climbing stairs and getting to the bathroom independently.

What is your greatest accomplishment:

I do not know what is my greatest achievement would be but I am proud that I can still walk and am still fairly independent.  Although, one of the most difficult challenges that I have had to overcome in life was to complete my studies despite the “circumstances of war and displacement” in Syria.

HOW HAS LGMD INFLUENCED YOU INTO BECOMING THE PERSON YOU ARE TODAY:

LGMD has taught me to be patient.  It has also taught made me more aware and open.

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:

If LGMD was cured tomorrow, the first thing I would do is run fast and then play football with my friends.

 

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INDIVIDUAL WITH LGMD: Younis
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