About EB (Epidermolysis Bullosa)

I have stated in the About Me! page that I have a skin condition called EB. Some of you reading this page will probably have thought... eh?! So now I intend to explain what EB is and about the charity DebRA who support people with this condition.

EB is a rare genetic condition where there is a defect in a particular gene in the largest, most vast organ of the body: the skin. The defect means that the top layer of skin does not adhere to the second layer therefore any friction or bump will cause extensive trauma to the skin. In most cases a fall will either cause large blisters to form which must be burst to prevent them getting larger they then have to be covered with specialist dressings in order to prevent infection and worsening of the area; or the skin will just come off altogether.

Hardly anyone knows about this condition. I am 22 and everyone I speak to thinks I have either been in a terrible accident or that I have burns. Hopefully this website will raise more awareness of the condition as well as answer questions.

With EB, it is not just the surface that is affected. Blisters can occur in the mouth, oesophagus and well anywhere really that has tissue. When they form in the mouth it can be really difficult to speak and when they form in the throat, not much can be swallowed as it blocks your oesophagus for several days depending on the severity. Many people with EB have to have their food completely liquidised to prevent blisters forming and to prevent choking as scar tissue left from blisters causes the oesophagus to narrow.

Dressings have to be changed on a regular basis to prevent infection. I have wonderful district nurses coming in 3 times a week. For most people with EB it can take as long as 3 or 4 hours to have their dressings changed.

There is currently no cure for EB and generally the condition worsens as you get older. Doesn't everyones?!

There are three main types of EB, they are:

EB Simplex (about 70% of sufferers have this type)

Junctional EB (about 10% of sufferers)

Dystrophic EB (about 20% of sufferers)