LGMD "스포트라이트 인터뷰"

이름:  Ralph    AGE: 58 Yrs. Old

국가: 미국

LGMD 하위 유형:  LGMD2L /  Anoctaminopathy

 

몇 살에 진단받으셨나요?:

I started having symptoms at age 47, back in 2006 and was diagnosed by 2011 when LGMD2L was discovered.

첫 증상은 무엇이었나요?:

Leg weakness. I was a big weightlifter and in my 30s had been bench pressing 300 pounds and squatting 400 pounds. But I felt weakness in my left leg and I went to the gym and tried to leg press with one leg at a time. My right leg was able to press 250 pounds but my left was lagging at 150 pounds.

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요?

I have one brother confirmed with 2L. There may be others but we don’t know yet.

LGMD와 함께 생활하면서 가장 어려운 점은 무엇인가요?:

Getting around in all situations. Stairs are hard. Getting out of a chair is hard. Walking is doable but getting more difficult to do for longer distances. And falls always happen if knees buckle or you trip or slip.

가장 큰 성과는 무엇인가요?:

I have been doing a great deal of work in the disability arena, including currently being on the MDA National Community Advisory Committee and working with several other organizations while I also start the LGMD2L Foundation.

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?

When you look at what I list as my greatest achievement you can tell that having LGMD2L has led me to work for so many people with disabilities of all types.

LGMD에 대해 전 세계에 알리고 싶은 내용:

That we are getting closer and closer to some real treatments and cures and if we all work together, this achievement of possibly eradicating muscular dystrophy would help so many people and families, present and future.

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

I would begin to work out again like in my youth and focus on building real strength and health while enjoying traveling and the beauties of the world.

 

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

* 이 게시물에 좋아요를 누르고, 댓글을 달고, 공유하여 LGMD에 대한 인지도를 높여주세요!