06/25/2015:

이름:  Rod   나이: 65 Yrs. Old

국가: 미국

LGMD 하위 유형: LGMD2L /  Anoctaminopathy

 

몇 살에 진단받으셨나요?:

I was diagnosed at the age of 49.

첫 증상은 무엇이었나요?:

My first symptoms included difficulty going up stairs and calf weakness.

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요?

아니요, 가족 중 LGMD 진단을 받은 사람은 저뿐입니다.

LGMD와 함께 생활하면서 가장 어려운 점은 무엇인가요?:

The greatest challenges that my LGMD2L presents are:  1)  reduced mobility and 2) not being able to participate in sports that I love such as surfing, snow skiing and water-skiing.

가장 큰 성과는 무엇인가요?:

My greatest accomplishment are my two wonderful, mature and beautiful daughters!

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?

Living with LGMD has shown me the way to strength, patience and empathy.

LGMD에 대해 전 세계에 알리고 싶은 내용:

I want the world to know that LGMD exists and what it is.  Most people have never heard of it.

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

The first thing that I would do if my LGMD were cured tomorrow would be to go to Slick Rock country in Utah and go for a long hike…with some river fly fishing thrown in at the end!