LGMD "스포트라이트 인터뷰"

NAME: Mackenzie   AGE: 22 yrs. old

국가: USA

LGMD 하위 유형: Unknown

몇 살에 진단을 받으셨나요?

I was just diagnosed last year at the age of 21.

첫 증상은 무엇이었나요?

My first symptoms included my feet and legs aching, sliding my feet when walking, fatigue and having a hard time lifting objects that should be easy to lift for a person of my age/height.

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요?

No, I am the only one.

LGMD와 함께 생활하면서 가장 큰 어려움은 무엇이라고 생각하나요?

The simplest things can make my body ache (cleaning, trying on clothes, shopping, etc). Constant fatigue is always a struggle. I’m learning to prioritize my daily activities and accept that I can’t always do what I want to do.

가장 큰 성과는 무엇인가요?:

I am finishing college to be an elementary/special education teacher.

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?

My diagnosis has been less than a year ago, but I have noticed that reaching my goals are more important to me. I also got engaged this year, and I am so happy that we were together before the diagnosis and he still asked me to marry him! I still have goals.

세상이 LGMD에 대해 알았으면 하는 것은 무엇인가요?

I want the world to know that we are not lazy. We wish we could be more active. Every day we think about what we want to do but don’t have the energy or pain tolerance to do. I want the world to know that we are people with hopes and dreams, just like them.

내일 LGMD가 '완치'될 수 있다면 가장 먼저 하고 싶은 일은 무엇일까요?

If LGMD was cured tomorrow, I would want to live without pain and have the energy a 22-year-old should have!

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