LGMD "스포트라이트 인터뷰"

이름:  Keisha  나이: 31 yrs. old

국가: 미국

LGMD 하위 유형 : Unknown

 

몇 살에 진단받으셨나요?:

I was diagnosed about 5 years ago at the age of 25-26.

첫 증상은 무엇이었나요?:

I noticed that I was repeatedly falling and that my leg would give out without any warning.  I also recall that I was unable to raise my right arm unless I had assistance.

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요?

So far, no one in my family has muscular dystrophy but I plan to have my parents tested to see if they are carriers.

LGMD와 함께 생활하면서 가장 어려운 점은 무엇인가요?:

One of the greatest challenges is always having to plan ahead – if going out with friends or family to make sure the place is handicapped accessible.  Every day it also takes me longer to get dressed in the morning.

가장 큰 성과는 무엇인가요?:

Coming to the fact that I have LGMD and still trying to figure out which form of LGMD.  And learning to embrace it.

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?

I feel LGMD has made me an unique individual helped me to bring awareness of the disease to others that don’t know much about it.  Having LGMD has helped me to become stronger and more independent.  I know that having LGMD is a part of me, I am human and still have my days just like anyone else.  I am a strong and proud woman with LGMD.

LGMD에 대해 전 세계에 알리고 싶은 내용:

LGMD is something that currently has no cure.  It is something that won’t go away.  Physical therapy and aquatic therapy help manage the disease.  Even with LGMD, we are still strong and can live a normal life just like anyone else.

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

If I could be cured tomorrow, I would want to run a marathon, run up and down the stairs, and take a big vacation somewhere to celebrate!

 

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