이름:  Younis  AGE:  14 yrs. old
국가:  Syria
LGMD 하위 유형:  LGMD 2C

몇 살에 진단받으셨나요?:

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.

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요?

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.)

LGMD와 함께 생활하면서 가장 어려운 점은 무엇인가요?:

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

가장 큰 성과는 무엇인가요?:

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.

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?

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

세상이 LGMD에 대해 알았으면 하는 것은 무엇인가요?

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.

내일 LGMD가 '완치'될 수 있다면 가장 먼저 하고 싶은 일은 무엇일까요?

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

 

* 더 많은 "LGMD 스포트라이트 인터뷰"를 읽거나 다음 인터뷰에 참여하려면 다음 웹 사이트를 방문하십시오. https://www.lgmd-info.org/spotlight-interviews 

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