INDIVIDUAL WITH LGMD: Rod
06/25/2015:
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!