04/08/2016 – LGMD “Spotlight Interview”

이름:  Mary   나이: 46

국가: 미국

LGMD 하위 유형: LGMD2A / Calpainopathy

 

몇 살에 진단받으셨나요?:

I was diagnosed with LGMD when I was 25 years old.

첫 증상은 무엇이었나요?:

My first symptoms were being unable to rise from a seated position without placing weight on my arms for support and difficulty in climbing stairs.

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요?

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

LGMD와 함께 생활하면서 가장 어려운 점은 무엇인가요?:

The greatest challenges for me are trying to remain independent with daily activities.  The disease progression is slow but not being able to do what you once were able to do is hard to adjust to.

가장 큰 성과는 무엇인가요?:

My greatest accomplishment was marrying my husband. I became a widow in 2014.  He was one of my greatest supporters.  He inspired me to be the best person I could be.  My family and friends are encouraging and a great support.

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?

I take nothing for granted.  Each day is a gift – some better than others.  I became more outgoing once my mobility became limited as I still want to experience and be active in life despite my diagnosis.

LGMD에 대해 전 세계에 알리고 싶은 내용:

LGMD is a muscle wasting disease.

Help those you can, become educated and treat everyone respectfully.

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

If a cure was found tomorrow, I would run, dance and jump!  All the things that I can no longer physically do would be top priorities!

 

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