03/28/2016

LGMD "スポットライト・インタビュー"

名前  Emily     年齢29歳

国名:  United Kingdom

LGMDサブタイプ:  LGMD2B

 

何歳で診断を受けたか:

I received confirmation of my LGMD2B diagnosis at the age 28 but at the age of 24 it was already suspected.

最初の症状は？:

My first symptom was struggling to climb stairs and I also noticed that I couldn’t stand on tip toes to reach books on my bookshelf

ご家族にLGMDの方はいらっしゃいますか？

No, it’s just me – all by myself!

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？:

There are many challenges. Like trying to be accepted as “disabled” when I don’t use a wheelchair. I find people don’t want to talk to me about it in general, which can be very isolating! At times I get self-conscious and anxious. Falling over in front of people is the worse and struggling to do things I once could is quite sad. I miss being able to run! Also the need to try and explain yourself. Having the odd wobble and feeling pathetic or weak.

あなたの最大の功績は何ですか？:

At the moment, leaving home and living independently in the countryside. I also volunteer for Muscular Dystrophy UK as a peer supporter, which to me is an amazing accomplishment.

LGMDは今のあなたにどのような影響を与えていますか？

Having LGMD has definitely given me a different outlook! I’ve learned to appreciate smaller things in life and become more determined to achieve things on any scale. I feel very positive and want to turn my diagnosis around to focus on the good things not the bad. It’s made me more aware and empathetic, I want to help others like myself. It’s aided my ‘wicked’ sense of humor too!

LGMDについて世界に知ってもらいたいことは？:

Everything! I just want people to understand the complexities of these conditions and the condition itself.

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？:

This is a tough question, there are so many!

I’d probably want to run first but also get on a sporty motorbike and learn to ride!

 

LGMDスポットライト・インタビュー "をもっと読みたい方、またはボランティアでインタビューに参加したい方は、ウェブサイトをご覧ください：  https://www.lgmd-info.org/spotlight-interviews