LGMD "스포트라이트 인터뷰"  

이름: Becky   나이:  35 yrs. old

국가: USA

LGMD 하위 유형: LGMD2B

 

몇 살에 진단을 받으셨나요?

I was diagnosed in 2009 at the age of 27.

첫 증상은 무엇이었나요?

My first symptoms were difficulty walking up steps, getting up from the ground or getting up from a seat/toilet.

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요?

No other family members have LGMD.

LGMD와 함께 생활하면서 가장 큰 어려움은 무엇이라고 생각하나요?

The biggest challenge for me is the mental part of understanding my limitations. Knowing that my life is not the way I had ever imagined it would be. Knowing the things my husband and I had to change in order to cope and deal with this continuously progressing disease.

가장 큰 성과는 무엇인가요?

I think my greatest accomplishment after being diagnosed with this disease is my marriage. We got married 2 months before I started having all of the tests to determine what was wrong. In sickness and in health came a lot sooner than we could have ever imagined, but we are stronger today because of it.

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?

This disease is life-changing. Despite how dependent I am on my family and friends I am still fairly independent. I drive with hand controls, I am resourceful in the ways that I find to keep doing things for myself, and in a way, even though my muscles are weaker, I am stronger. This didn’t happen all at once. It took time to realize that I am a strong person even though my muscles are weak.

세상이 LGMD에 대해 알았으면 하는 것은 무엇인가요?

I want the world to know and understand that this disease is so challenging. Sometimes my brain doesn’t remember that I can’t do something and I will just start to do it only to realize I can’t. I want them to know that from the moment someone with LGMD wakes up they have to immediately think about how they are going to tackle the day. The world should know that this disease, while somewhat invisible, is real and is extremely difficult to deal with. That just because someone is out and about with this disease does not mean that they are OK or cured. We still have to live our lives, even if behind our smile we are exhausted or hurting. The world should also know that THERE WILL BE A CURE. There are so many people working on this and the strides made in just the few short years I’ve been diagnosed have been huge.

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

This list is LONG….but first I would run. My legs haven’t moved that way in such a long time.

 

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