LGMDスポットライト・インタビュー

名称: Zia   年齢: 26

国名: Australia

LGMD サブタイプ Limb-Girdle Muscular Dystrophy type 2i

 

何歳で診断されたか:

I was diagnosed with Muscular Dystrophy at the age of two. After many tests and doctor visits, I was fully diagnosed Limb-Girdle Muscular Dystrophy type 2i at the age of 22.

最初の症状は？:

At the age of 1, Mum noticed that my twin sister and I weren’t walking, we weren’t even crawling properly more like shuffling on our bottoms. It was then that our Mum knew something wasn’t right.

ご家族にLGMDの方がいらっしゃいますか？

Only my twin sister Cyanne has Limb-Girdle Muscular Dystrophy type 2i.

LGMDと共に生きる上で、最も困難だと感じることは何ですか？:

Every day is the greatest challenge for me as I have to fully rely on my Mum and caregivers to get me out of bed in the mornings and everything in between so I can live my life.

あなたの最大の功績は何ですか:

Oh, I have many accomplishments in my life with many more to come! My greatest accomplishment would be being able to study. I am currently studying a Certificate IV in Legal Services. In 2016 I received my Certificate IV in Small Business Management and started my own editing and proofreading business called Wondrous Words with Zia. I also have an Advanced Diploma in Arts (Professional Writing), a Certificate in Professional Editing and Proofreading, as well as a Society of Editors (SA) Award for Highest Achievement in Editing.  I also had the pleasure in working at the library for 6 months with some amazing people.  I am also actively involved in the community. I, and about 15 other people are a part of the Youth Advisory Committee (YAC). We work closely with Council members, attend Council meetings, voice our concerns and opinions for local young people in Whyalla, and plan and organize events.

LGMDは今のあなたにどのような影響を与えていますか？

I focus on what I can do rather than what I cannot do. My motto is: “I do what I can and love what I can do!”

LGMDについて世界に何を知ってもらいたいですか？:

I would like the world to know that living with LGMD is challenging. LGMD affects your

muscles not your mind and that I am still capable of being a part of everyday life.

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？:

I would just run and run and run and run and… well, I think you get the picture lol ?

 

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