Epidermolysis Bullosa (EB) is known as ‘the worst disease you’ve never heard of’ and very few people have heard of it.
EB is a rare genetic disease where the skin blisters daily and tears like tissue paper at the slightest touch. It is likened to living with 3rd degree burns and as you can imagine, it is extremely painful.
EB means the protein or ‘glue’ that binds the skin layers together is missing. Friction blisters and tears are formed constantly, sufferers endure an enormous amount of pain.
They have open wounds that never heal, they are bathed in bleach, sometimes salt and suffer through a painful routine dressing changes where their blisters are lanced and drained.
There are 3 different main types of EB that effect the different layers of skin externally and internally, which can also result in an early death.
There are only around 1000 EB sufferers in Australia so it doesn’t get a lot of attention.
Our mission is to find a cure for Epidermolysis Bullosa (EB).