Epidermolysis Bullosa

The Worst Disease You've Never Heard Of

what is it?

Epidermolysis Bullosa or EB for short is a disease that causes your skin to blister and fall off after minimal friction or heat. More severe kinds can cause internal blistering and be fatal. It is caused by a defective or mutated gene involved in the attachment of the Epidermis and dermis layers of your skin.

There are four different kinds of EB-


This is the most common and least severe kind.


In this type the collagen in the skin is missing or nonfunctional.


The most rare form; caused by the immune system attacking the skin.


This is the most severe and fatal type.


  • inherited
  • random mutation of genes

Signs and Symptoms

  • Severe blistering and loss of skin
  • Internal blistering, including the mouth and esophagus
  • Hyperkeratosis
  • Alopecia and scalp blistering
  • Atrophic scarring (thin looking skin)
  • Milia ( pimple like bumps)
  • Tooth decay and misshaped teeth
  • Disphagia (difficulty swallowing)
  • Loss of finger and toe nails


Most of the types of EB are not fatal, while Junctional EB is extremely life threatening. Most babies born with it are not expected to live more that two years. 1 in every 50,000 people are born with EB.

This is how i found out about Epidermolysis Bullosa

This video is about a boy, named Johnny, with Junctional Epidermolysis Bullosa.

The Boy Whose Skin Fell Off (Jonny Kennedy) 1/5