WYWIAD Z LGMD SPOTLIGHT

Nazwa: Zia   Wiek: 26

Kraj: Australia

Podtyp LGMD: Limb-Girdle Muscular Dystrophy type 2i

 

W JAKIM WIEKU ZOSTAŁEŚ ZDIAGNOZOWANY?:

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.

JAKIE BYŁY PIERWSZE OBJAWY:

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.

CZY MASZ INNYCH CZŁONKÓW RODZINY, KTÓRZY CHORUJĄ NA LGMD?

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

CO UWAŻASZ ZA NAJWIĘKSZE WYZWANIE W ŻYCIU Z 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.

JAKIE JEST TWOJE NAJWIĘKSZE OSIĄGNIĘCIE?:

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.

JAK CHOROBA ALZHEIMERA WPŁYNĘŁA NA TO, ŻE STAŁEŚ SIĘ OSOBĄ, KTÓRĄ JESTEŚ DZISIAJ:

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!”

CO CHCIAŁBYŚ, ABY ŚWIAT DOWIEDZIAŁ SIĘ O 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.

GDYBY JUTRO MOŻNA BYŁO "WYLECZYĆ" CHOROBĘ ALZHEIMERA, CO BYŁOBY PIERWSZĄ RZECZĄ, KTÓRĄ CHCIAŁBYŚ ZROBIĆ?:

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

 

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