LGMD "스포트라이트 인터뷰"

이름: Tony  나이:  32

국가: 미국

LGMD 하위 유형: LGMD2i

 

몇 살에 진단을 받았습니까?:

I was diagnosed with LGMD around the age of 26 at the Cleveland Clinic and then officially diagnosed with 2i last year through genetic testing.

첫 증상은 무엇이었나요?:

Looking back, I was always struggled to keep up a bit with other kids while playing sports, hiking, running, etc. My first noticeable “something might be up” symptoms started showing while I was touring the country with bands and loading gear every night about 10 years ago. I began to struggle a bit doing things I’d previously never had problems with (going up stairs without using a handrail, carrying large gear, etc.)  I continued to notice small things getting more difficult through college but (of course) ignored it for years.

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요?

Nope. Just me.

LGMD와 함께 생활하면서 가장 큰 어려움은 무엇이라고 생각하십니까?:

Adjusting and adapting and giving up things I’ve greatly enjoyed. Having to be extremely careful with seemingly every single movement. I greatly miss things like going for a run (even if it wasn’t quite graceful), walking to get groceries, and just getting from point A to point B uninhibited.

가장 큰 성과는 무엇인가요?:

Finishing college after putting it on hold to play music and travel all over with my friends. Writing comedy for an independently released movie, web series, and book. Moving to Los Angeles and pursuing/accomplishing a career in entertainment/media and marrying the most perfect person for me in the world.

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?

It’s greatly improved my problem solving skills; making me more resourceful, creative, and patient. I’ve been able to apply that to my career and other parts of my life that have definitely made me a better teammate, friend, husband, and creative person. At least I think it has and I hope others would agree!

세상이 LGMD에 대해 알았으면 하는 것은 무엇인가요?

A good start would be getting the entire world to know it actually exists. That it’s a major struggle for those affected but so many of us are living happy/productive lives, and there are treatments and cures on the horizon that we’d love everyone’s help and understanding in pushing them to the finish line.

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

Man…I think about this constantly so I already have the day planned: I’d take my dog for a nice, long walk (maybe run?). I’d carry all the groceries in instead of needing my small wife to deal with it. I’d play hacky sack with some college dudes and maybe try this “hiking” thing that people in Los Angeles seem to love so much.

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