06/24/2016

LGMD "スポットライト・インタビュー"

名称:  Donna-Marie      年齢:32歳

国名: United Kingdom

LGMDサブタイプ: LGMD2i

何歳で診断を受けたか:

I stared tests at 12 years old, had a Muscular Dystrophy diagnosis at 13 and the subtype a few years later.

最初の症状は？:

Generally being slower than other children in PE lessons. My teachers noticed that I couldn’t keep up but knew I was too much of a goody two shoes that I had to be trying my hardest!

ご家族にLGMDの方はいらっしゃいますか？

Nope, I’m 100% unique J

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 challenge for me is how it affects me mentally; I know that I am lucky with my LGMD and that I could have much bigger problems so I try not to complain too much about it but  I did spend a couple of years wanting to hide from the people who stare at me and my limp. My boyfriend of 4 years has changed my attitude to my disability more than I could have ever imagined and although I don’t care about people looking at me anymore, I sometimes struggle when we go out as I feel embarrassed for him when people stare at us and feel like he should be with someone “normal” at his age.

I also hate that I can’t storm off during an argument, especially if I’m sat down on a low chair, ha ha!

あなたの最大の功績は何ですか？:

I’d love to say that my greatest achievement is something to do with a career but I have to say that in that department I don’t have much to brag about. But I find it an accomplishment that I manage to keep going and stay positive. I have a modest career but I do still work and socialize.  I don’t try to hide away anymore feeling like Quasimodo!

LGMDは今のあなたにどのような影響を与えていますか？

LGMD has made me grateful for the amazing people I have in my life. I could not wish for a better family, partner or friends.

LGMDについて世界に知ってもらいたいことは？:

I’d like the world to know that LGMD doesn’t affect my brain or my eyes!

I don’t need to be talked to like a child and I can see the nudges, whispers and stares.

 

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？:

There are so many things I could list here but the truth is that I think the very first thing I would do is go out and celebrate with as many drinks as I could handle and not worry that if I fall down, I stay down! And maybe throw in dancing on a few bars J

But as that was a pretty rubbish answer I’d like to add that afterwards I’d go away on a nice holiday with my boyfriend and family where none of them had to worry about if the ground was too uneven, or if there are any steps, or that I can’t walk on the beach or get in/out of a pool or up from a chair.

 

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。