My name’s Fletcher and I’m 11 years old. I have EB Simplex, that’s the type of EB that mostly affects me on my feet and hands, but actually I can get it anywhere on my body. I usually get blisters on my feet when I’ve been running around, especially when it’s hot. I also get them sometimes on my hands when I’ve been drawing or writing too much.
There’s not too many people in Australia who have EB, although my dad, my grandad and my auntie all have it, so it runs in the family. In Western Australia, there’s only a few of us who have EB. Once in a while I have to go to Princess Margaret Hospital to get checked by the skin doctor there, and I meet with the nurse who gives me advice about the bandages I can use for my blisters, and how to cut my blisters and look after my skin.
Life with EB can be tough sometimes, especially in summer when it’s hot and I get blisters on my feet every day and find it hard to walk and run. One good thing about living in Perth is that when it’s hot we go to the beach and I get my feet soaked in the ocean, which is the best thing to help my blisters heal.
It makes me happy to know that there are people who care about all of us who are living with EB. I hope that one day all the money that is raised can help to find a cure for EB, so that kids like me can live a normal life. In August last year my mum, dad, sister and I raised money by doing a 5km walk in the City to Surf. It was great but my feet really hurt afterwards for days!
I want to say a big thanks to everyone who is raising money to support and help people like me with EB.
