DEBRA NZ NEWSLETTER CHRISTMAS 2022
TO DEBRA NZ
Improving the quality of life for people with Epidermolysis Bullosa (EB) and their familes.
EB skin is as fragile as a butterfly's wings.
DEBRA NZ MAKES A DIFFERENCE
We support DEBRA NZ families and individuals
We ensure those with EB know they are not alone.
We ensure practicle advice and guidence is shared.
INFO + ACCESS
Ensure information on and access to current best practice care & treatment.
WHAT IS EPIDERMOLYSIS BULLOSA (EB)?
Epidermolysis Bullosa is medical Latin for skin that blisters and tears easily. Epidermal describes ‘outer skin layers’; lysis means ‘tearing and shearing’; and the Bulla are the ‘blisters’ that develop.
Relax, even doctors refer to Epidermolysis Bullosa as ‘EB’!
If you have EB then your skin is more delicate, it blisters or tears more easily. In severe EB the slightest touch can cause skin to blister or come off and leave wounds like burns. It’s as if there’s no glue between the skin and the tissue below. It can also occur in the mucous membranes, particularly inside the mouth and throat causing major issues with nutrition.
More than 180 New Zealanders live with a form of this genetic disorder. While most have mild to moderate symptoms, many require specialist and ongoing clinical care to varying degrees.
Severe forms of EB have an incidence of about 1 in 300,000.