İSİM:  Younis  YAŞ:  14 yrs. old
ÜLKE:  Syria
LGMD ALT TİPİ:  LGMD 2C

Kaç yaşında teşhis konuldu?:

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.

LGMD hastası olan başka aile üyeleriniz var mı?

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.)

LGMD ile yaşamanın en büyük zorluklarının ne olduğunu düşünüyorsunuz?:

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

En büyük başarınız nedir?:

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.

LGMD BUGÜN OLDUĞUNUZ KIŞI OLMANIZDA SIZI NASIL ETKILEDI?

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

DÜNYANIN LGMD HAKKINDA NE BİLMESİNİ İSTİYORSUNUZ?

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.

LGMD HASTALIĞINIZ YARIN "TEDAVİ" EDİLEBİLECEK OLSA, YAPMAK İSTEYECEĞİNİZ İLK ŞEY NE OLURDU?

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

 

* * * Daha fazla "LGMD Spotlight Röportajı" okumak veya gelecek bir röportajda yer almak için gönüllü olmak için lütfen web sitemizi ziyaret edin https://www.lgmd-info.org/spotlight-interviews 

* * * LGMD konusunda farkındalık yaratmaya yardımcı olmak için lütfen bu gönderiyi BEĞENİN, YORUM YAPIN ve PAYLAŞIN!