There was a recent update of the classification system (2019). In simple terms, EB cases are grouped together by the genetic defect itself, which results in where precisely the blisters occur in the skin, and the resulting clinical behaviours. Severe cases will present as a blistered baby at birth, whilst milder cases may only reveal problems when the child crawls, walks or runs or even later as young adults become more active. Patients with the mildest form of the disease may never have to seek medical help.

Only read the following sections when your child has a definitive diagnosis, and only read the subsection relevant to you and your family.