LGMD "스포트라이트 인터뷰"

이름:  Dylan                                  나이:  28 years old

국가:  United States of America

LGMD 하위 유형:  LGMD 2J / R10 Titin-related

몇 살에 진단받으셨나요?: 

저는 23살에 진단을 받았습니다.

첫 증상은 무엇이었나요?: 

I started noticing how “normal” things got increasingly difficult for me to do – walking up flights of stairs, standing up after sitting on the floor, jumping and squatting. I had constant muscle fatigue and would randomly fall. After I lost the ability to run and the falls became more frequent, we knew something was up.

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요? 

Nope. I am the one and only!

LGMD와 함께 생활하면서 가장 어려운 점은 무엇인가요?:

It is a cruel disease because not only does it naturally take away our strength and mobility, it tries to take away our hope and our control over our own life. While our bodies deteriorate daily with no treatment or cure in sight, it is easy to feel defeated and neglected. I believe that to be one of its biggest challenges – keeping our head above water. That is why it is so especially important to stay positive and live life to YOUR best ability, no matter what that looks like!

가장 큰 성과는 무엇인가요?:

I have been incredibly lucky and fortunate to be able to travel the country (44 states) playing music with some of the best guys in the world. Not sure how much longer I will be able to do that, but it has been a dream come true. I am also a proud graduate of Texas Christian University (Go Frogs) and I was a state champion in chess when I was a boy. I also think I am a rather good dog dad!

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?

It teaches me new things every single day. I have gained a lifetime’s amount of perspective in such a short time. I have become a better problem solver. I am much more patient with myself and others. I appreciate every moment and every single step that I have left. I smile more and look at the clouds and treat everyone gently now. Try to be someone’s hero. Besides suffering from LGMD, I am the luckiest man alive with the best family and friends anyone could ask for.

LGMD에 대해 전 세계에 알리고 싶은 내용:

That we are people with goals, aspirations, passions, and feelings – just like everybody else. A lot of us were once pretty “normal” too. If everyone knew what hoops and hurdles had to be jumped through for someone with LGMD just to get through their normal daily routine, people would start to understand how tough and resilient our community is. They would realize that this is a community and disease worth fighting for. So be an advocate while researchers and scientists get these mysterious diseases figured out!

내일 LGMD가 "완치"될 수 있다면 가장 먼저 하고 싶은 일은 무엇인가요?:

I would run around in the yard with my dog, dance with a nice and pretty lady, play some baseball with my friends, and probably climb a mountain just because!

더 많은 'LGMD 스포트라이트 인터뷰'를 읽거나 다음 인터뷰에 출연을 신청하려면 다음 웹사이트를 방문하세요: http://lgmd-info.org/spotlight-interviews