LGMD SPOTLIGHT INTERVIEW
LGMD Sub-Type: Limb-Girdle Muscular Dystrophy type 2i
AT WHAT AGE WERE YOU DIAGNOSED:
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.
WHAT WERE YOUR FIRST SYMPTOMS:
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.
DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD:
Only my twin sister Cyanne has Limb-Girdle Muscular Dystrophy type 2i.
WHAT DO YOU FIND TO BE THE GREATEST CHALLENGES IN LIVING WITH 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.
WHAT IS YOUR GREATEST ACCOMPLISHMENT:
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.
HOW HAS LGMD INFLUENCED YOU INTO BECOMING THE PERSON YOU ARE TODAY:
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!”
WHAT DO YOU WANT THE WORLD TO KNOW ABOUT LGMD:
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.
IF YOUR LGMD COULD BE “CURED” TOMORROW, WHAT WOULD BE THE FIRST THING THAT YOU WOULD WANT TO DO:
I would just run and run and run and run and… well, I think you get the picture lol 😂
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