If you are the parent, relative or friend of a new EB baby, this site provides lots of
information that will be helpful in the first few days, weeks and months of life.
What is EB?
Epidermolysis Bullosa is group of inherited genetic blistering diseases of the skin. There are three main forms of inherited EB: EB Simplex, Junctional EB and Dystrophic EB. These different subtypes are defined by the depth of blister location within the skin layers.
Blister formation of EB simplex is within the epidermis. Sometimes EB simplex is called epidermolytic. Blister formation in Junctional EB is seen at the level of the lamina lucida within the basement membrane zone. Dystrophic EB or dermolytic EB is a scarring form of EB which occurs in the deeper tissue at the level the lamina densa or upper dermis.
Essentially, someone with EB is missing the "glue" that holds the skin together. By doing a biopsy, doctors are able to determine which "glue" a person is missing and therefore tell what type of EB they have.
Here you can find information on the day to day care of an EB baby and some answers to many frequently asked questions. *NEW*
To locate helpful tips for EB patients in the hospital, click here. It also includes the do’s and don’t when it comes to an EB baby in the hospital.
