ИНТЕРВЬЮ С LGMD SPOTLIGHT

Имя: Zia   Возраст: 26

Страна: Australia

LGMD Подтип: Limb-Girdle Muscular Dystrophy type 2i

 

В КАКОМ ВОЗРАСТЕ ВАМ ПОСТАВИЛИ ДИАГНОЗ:

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.

КАКИЕ У ВАС БЫЛИ ПЕРВЫЕ СИМПТОМЫ:

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.

ЕСТЬ ЛИ У ВАС ДРУГИЕ ЧЛЕНЫ СЕМЬИ, СТРАДАЮЩИЕ ЛГМ:

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

ЧТО, ПО ВАШЕМУ МНЕНИЮ, ЯВЛЯЕТСЯ НАИБОЛЬШЕЙ ТРУДНОСТЬЮ В ЖИЗНИ С LGMD:

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.

КАКОЕ ВАШЕ САМОЕ БОЛЬШОЕ ДОСТИЖЕНИЕ:

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.

КАК БОЛЕЗНЬ ЛГМ ПОВЛИЯЛА НА ТО, ЧТО ВЫ СТАЛИ ТЕМ ЧЕЛОВЕКОМ, КОТОРЫМ ЯВЛЯЕТЕСЬ СЕГОДНЯ:

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!”

ЧТО ВЫ ХОТИТЕ, ЧТОБЫ МИР УЗНАЛ О ЛГМД:

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.

ЕСЛИ БЫ ЗАВТРА МОЖНО БЫЛО БЫ "ВЫЛЕЧИТЬ" ВАШ ЛГМД, ЧТО БЫ ВЫ СДЕЛАЛИ В ПЕРВУЮ ОЧЕРЕДЬ:

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

 

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