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Zach's story: A young person's perspective on living with the skin condition epidermolysis bullosa

by Zach

A lot of days I wish this hadn't happen to me. If you are wondering what I'm referring to when I say "this", I mean the skin condition I was born with. It's called epidermolysis bullosa, or simply EB. My name is Zach. I am an only child and I was born in far north Queensland in 1993.

I'm 12 in this photo.

I was born with my disability, as were my mother and my Nan.

It's genetic and when/if I have a child, it has a fifty-fifty chance that it will have it as well. It kills me knowing that if I have a kid I could put them through what I've had to deal with.

I used to be worried about even getting a wife and a life of my own, but these days "girlfriend" problems aren't much about my having EB.

This condition has given me so many struggles and difficulties as I have grown up. As a young man, I often worry about getting a good job and being able to provide for myself throughout my life. I certainly don't want to sit around on the dole and lead the kind of life that amount of money would provide.

Luckily, just when I was worrying about being the last in line for any job because of my disability, my grand parents let me know that, as they are equal-opportunity employers and they already employ a few others with disabilities at the same wage as everyone else, if I do well in school I will be first in line for a job with their company as soon as I turn 16.

Starting High School, in school uniform

I was teased about my skin at primary school, being called "skinless boy" and "a freak" and I often had worries about whether I would ever fit in.

The actual symptoms of the condition are that, instead of having 7 layers of skin like normal people, I have skin that is as thin as three layers, they are like tissue and very weak. My skin breaks easily and I'm left with either sores or blisters that leave big red scars.

I started to realize I wasn't the same as others at about the age of four.

People looked at me differently and I realized they didn't have what I have. At about the age I went to preschool, I really started to feel the effects of my problems I had very few mates, which left me feeling very lonely. I wanted to be like the other kids; to just fit in.

At about the age of fourteen, I became a member of a group of kids known as the "Emo's". Which basically means our look is: black hair coming down over an eye, we wear make-up, skinny-legged black jeans, bands on our wrists and many have piercings.

Zach dressed 'Emo' fashion.

"Emo" is short for "Emotional" and this group is also known for deep depression and for cutting themselves.

I felt I had to become something to fit in. I'm dressing, looking and living like an Emo, but today I only do it because I have a lot of Emo friends and I like the fashion and the music.

This didn't save me from being bagged though.

Emo's get teased too, but I liked the idea of being a "we" rather than a "you", out there on your own. I have had this skin all my life. Can you imagine that? Waking up and knowing that today, you're going to get teased and bashed at school because "you're not normal"?

The getting bashed part stopped when I moved to Victoria but I'll get to that later.

Even after 14 years with this skin I find it hard to cope, although it has grown easier. I am grateful that I've made it this far.

When I lived up in Queensland I got beaten up a lot and, being very young and being "different", I found it really hard to make friends.

When Mum and I moved down here 4 years ago I found the attitudes of people were more accepting and I managed to start a better life.

I have been going a lot better than up there. I have managed to make tons of new friends who are understanding and helpful. I don't get beaten up anymore and the teasing has cut right down.

Due to the teasing and bashing I've learned to fight for myself and be strong.

But still, for many kids around the world, it is hard. Living with EB is hurting many families. There are EB patients out there struggling to survive because their condition is far worse than mine. Or others that have to be treated medically on a daily basis with bandages and other things, to help them get through just another day.

What I often did to help me cope with this was I'd talk to my family about it and I'd talk to the school councilor. I would say to myself, "I've got to live with this so I'm going to try and get through it", and I have. It wasn't easy - don't think it was. It was hard and seemed endless, but I've made it.

My life is changing for the better every week.

I hope that writing my thoughts will help other people out there with EB, or just motivate other people. It might inspire you to keep going with your life so that you can make it.

Today, as an Emo When I first came down from FNQ - aged 9

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