INDIVIDUAL WITH LGMD: Younis

NOME:  Younis  IDADE:  14 yrs. old
PAÍS:  Syria
SUB-TIPO LGMD:  LGMD 2C

Com que idade foi diagnosticado:

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.

Tem outros familiares que sofrem de 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.)

Quais são, na sua opinião, os maiores desafios de viver com a LGMD?:

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

Qual é a sua maior realização:

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.

COMO É QUE A LGMD O INFLUENCIOU A TORNAR-SE A PESSOA QUE É HOJE?

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

O QUE É QUE QUER QUE O MUNDO SAIBA SOBRE A 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.

SE A SUA LGMD PUDESSE SER "CURADA" AMANHÃ, QUAL SERIA A PRIMEIRA COISA QUE GOSTARIA DE FAZER:

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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