Now that the exhibtion is finished, I can finally put my work up online for everyone to see. This is for all of those people who didnt grace the exhibtion with their presence! (you missed out, It was amazing!)
Artist Statement:
Epidermolysis Bullosa is a genetic skin condition that affects 1 in 17,000 births every year. There are approximately 5,000 people in the UK alone that have been officially diagnosed with it. Epidermolysis Bullosa has three types: EB Simplex, Junctional and Dystrophic. Although there are three very specific forms of EB each case is different and each case has its own set of unique problems. It is very painful rare condition that affects the layers of the skin and their ability to blind together. Therefore painful and large blisters form at the slightest irritation.
I was officially diagnosed with this hereditary disease when I was three years old. This was when I realised that I was different form other people and that a lot of people wouldn’t understand what it is like to live with this condition.
The main purpose of this project is to make people aware of this condition. I want to show them, what it is like for me to live with this condition and how it affects myself. I want to show what people who have EB have to cope with on a daily basis. This piece of work will encourage the viewers to ask how the illness affects the lives of those who suffer with EB, as well as how it could affects members of the family. I want to explore and question issues like what it is like to live with this condition, but most importantly what psychological effects it can have combined with what is portrayed as a means of coping with this painful condition.
The aim of this project is to show the effects of EB in a way that is thought provoking, engaging and eye opening at the same time. I will be using emulsion lifts as metaphors for how fragile the skin can be and, I hope that by telling an unconventional story of how I suffer with Epidermolysis Bullosa, then people will become more aware of this condition, and leave with their own opinions of the work and what it means.