LGMD "스포트라이트 인터뷰"

이름:  Andrea  나이: 24 yrs. old

국가: 미국

LGMD 하위 유형:  LGMD2A – a form of Calpainopathy

몇 살에 진단받으셨나요?:

I was diagnosed at the age of 11.

첫 증상은 무엇이었나요?:

At age 8, I could not stand with my heels on the ground and began toe walking shortly thereafter. Weakness in my shoulders and hips followed.

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요?

No, I am the only family member diagnosed with LGMD.

LGMD와 함께 생활하면서 가장 큰 어려움은 무엇이라고 생각하시나요? 가장 큰 어려움은 무엇인가요?:

Not being able to use Uber!

The progressive nature of the disease is challenging. I’ve had to adjust to the loss of certain abilities over time, and it’s difficult knowing that these losses will continue. For example, I could walk as a child, I used a Segway to get around during my teenage years, and now I use a wheelchair. For me, the most difficult adjustments have been no longer being able to visit friends’ homes because they nearly always have steps, and no longer being able to play musical instruments I once enjoyed.

가장 큰 성과는 무엇인가요?:

I feel fortunate that I found an area of study in college that I am passionate about and can pursue with LGMD. I’m proud of myself for moving to a new state for graduate school in biostatistics and living independently. But of course several people have helped me along the way (love you mom and dad :).

LGMD가 지금의 당신이 되기까지 어떤 영향을 미쳤나요? 어떤 영향을 미쳤나요?

Sometimes life gives you challenges that you can’t change, but the process of dealing with those challenges can often be very rewarding. Living with LGMD has made me a stronger person in many ways despite physical weakness. It has also taught me the value of vulnerability and embracing sadness to fully experience joy. Actually maybe the movie “Inside Out” taught me that…

LGMD에 대해 전 세계에 알리고 싶은 내용:

Everyone should watch Stella Young’s TED Talk titled “I am not your inspiration, thank you very much.” She shares a great message about the exploitation of persons with disabilities. I believe that the vast majority of us on this earth are doing the best we can despite the various traumas we’ve endured. For those of us with physical disabilities, that trauma is just a little more obvious to the naked eye.

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

This question is the most difficult for me. I’ve never really been jealous of people running, hiking, or going to the gym. I’d probably just go to school but use the stairs instead of the elevator. But that’s a boring answer. Maybe I’d be more dramatic; I could sell my wheelchair and use the money to take my family to Europe. Being able to use the restroom on an airplane could be exciting. But I’d miss the special treatment that comes with using a wheelchair. Being different has its perks.

*** Please LIKE, COMMENT and SHARE this post to help raise awareness of LGMD!

*** 더 많은 "LGMD 스포트라이트 인터뷰"를 읽거나 다음 인터뷰에 참여하려면 다음 웹 사이트를 방문하십시오. https://www.lgmd-info.org/spotlight-interviews