Author Description

Epidermolysis Bullosa, EB, is probably the worst condition you’ve never heard of. Even in its mildest forms, it affects every day, and pain is a constant companion. In this book are stories from the experts: the people that live with EB. Some of us in here have the condition, others are the parents, partners, or siblings of someone living with the condition; we all have something important to share. And we would love to share these stories with you, whether you are new to the EB community, you are part of the community, or you just want to know more about us. Our skin is likened to the fragility of a butterfly’s wing, so the butterfly has become a symbol for us. We live with EB. We are Extraordinary Butterflies. EDIT: We have realised that, although Rachel Lee-Davis contributed hugely to the book, the chapter, Living With EB, was written by Vie Portland,.and not Rachel. Epidermolysis Bullosa is a rare, genetic, skin blistering condition. There are only around 500,000 people worldwide with the condition.(there are around 223 million with eczema) and it's one of the rarest skin diseases there is.