04/08/2016 – LGMD “Spotlight Interview”

名前:  Mary   年齢: 46

国名:アメリカ

LGMDサブタイプ: LGMD2A / Calpainopathy

 

何歳で診断を受けたか:

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

最初の症状は？:

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.

ご家族にLGMDの方はいらっしゃいますか？

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

LGMDと共に生きていく上で、最も困難だと感じることは何ですか？:

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.

あなたの最大の功績は何ですか？:

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.

LGMDは今のあなたにどのような影響を与えていますか？

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.

LGMDについて世界に知ってもらいたいことは？:

LGMD is a muscle wasting disease.

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

もし明日、あなたのLGMDが "治る "としたら、まず何をしたいですか？:

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!

 

LGMDスポットライト・インタビュー」をもっと読みたい方、または今後のインタビューに志願したい方は、ウェブサイトhttps://www.lgmd-info.org/spotlight-interviews。