LGMD "스포트라이트 인터뷰"

이름:  Kelci   나이: 23 yrs. old

국가: 호주

LGMD 하위 유형 (if known):  LGMD2J – Titinopathy

 

몇 살에 진단받으셨나요?:

I was just recently diagnosed at the age of 23.

첫 증상은 무엇이었나요?:

At first I noticed having to consciously think about stepping up on to pavement or ledges. I then noticed that climbing stairs was getting more difficult as well as walking distances.

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요?

Yes, one sibling does.

LGMD와 함께 생활하면서 가장 어려운 점은 무엇인가요?:

The greatest challenge about living with LGMD is finding daily activities such as walking distances or climbing stairs difficult, as these were things that I once didn’t think twice about. Another challenge for me is having a rare form of Muscular Dystrophy, as there is hardly any information for me to relate to or predict what may happen.

가장 큰 성과는 무엇인가요?:

LGMD is still very new to me as I was only diagnosed 3 months ago, I am still trying to adjust and figure out what living with LGMD is going to mean for my future. My biggest accomplishment is just simply learning how to stay positive and incorporate Muscular Dystrophy into my life.

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?

I believe I have learned not to take anything for granted and to appreciate what you have, while you have it. It’s so important to stay positive!

LGMD에 대해 전 세계에 알리고 싶은 내용:

I think it’s important to realize that we are still the same person we once were. People should also know that not every day is the same for someone with LGMD, some days we will be better than others and what we can do one day we may not be able to do the next.

 

 

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