Some people think it is a disease. Some people do not know what to think of it. But we know what it is: it is a skin condition, fragile skin. I have EB and I and my friend Alice are going to tell you all about it.
Epidermolysis Bullosa (EB) is a group of genetic skin conditions which causes the skin to blister at the slightest touch. There are three main types of EB: Simplex EB (which I have), Dystrophic and Junctional EB which are worse. Simplex is the mildest and Junctional is the worst.
Blisters are formed by friction or small rips to the skin. They are like balloons that fill with water apart from the water is fluid and the balloon is skin. It gets bigger and bigger until it gets popped with a special needle.
Simplex EB is the most common form of EB with 70% of the people with EB were diagnosed with Simplex. It typically forms itself a blistering itself to the hands and feet. In another of simplex skin blisters can occur all over the body. As you get older, the blisters don’t occur as much as you know what causes the blisters (seams in clothes and rough surfaces) and you can avoid this from happening (wearing seam-free clothes under seamy t-shirts or just in general).
Dystrophic EB is the second most common with 20% of the people with EB being diagnosed with it. It can be inherited (like Simplex) or not. When the blisters heal, it can leave scarring leading to contraction to the joints and narrowing of the oesophagus. Often the inherited type of Dystrophic EB is less severe and it can lead to an almost normal life. Of course it won’t completely heal. People with Dystrophic EB have a high chance of developing skin cancer before the age of 35, this can be quite frightening for people with this type of EB.
Junctional EB is, of course, the least common type with only 10% of the people suffering with EB have it. It is the most severe type of EB as it is fatal in infancy as only few babies survive past their third year; therefore this is a life-threatening condition. The milder form of Junctional EB isn’t life threatening however it can cause life-long pain and a disability.
dEBra is a charity that helps support families that have EB and they also do some amazing research. They give families advice and organise events so families with EB can come together and meet up.
My name is Rebecca and I have Simplex EB. My skin is getting better each year but I still do everything that is necessary. 1-2 times a day, my mum checks my skin and pops any blisters that has formed during the course of the day/night. After she has popped the blisters, she applies some cream to the skin to help the skin. I wear seam-free t-shirts under my school uniform and at the weekend I wear seam-free clothes. Every year I go to London, to Great Ormand Street Hospital, to get a check-up and gat advice from the dermatology department.
Thank you for reading. I hope this has given you a brief idea about Epidermolysis Bullosa.
Rebecca and Alice (Year 6)
