Jonny Kennedy NE
Epidermolysis Bullosa, known as EB, is the name of a rare group of genetic skin disorders causing blistering and shearing of the skin from even the gentlest friction and sometimes spontaneously.
There are three major types of EB; Simplex, Dystrophic and Junctional. These vary from relatively mild to incapacitating, crippling, and sometimes fatal disorders. Within these there are over twenty different sub types of EB, each with their own characteristic symptoms.
All forms of EB are genetic in origin and the genes responsible for most of the sub-types of the condition are now known. Some still await identification.
The genetic defects result in the skin cells collapsing or skin layers not adhering properly to each other, causing areas of structural weakness. This fragile skin is particularly vulnerable to damage from friction, causing the continual blistering that is the characteristic feature of the condition.
JKNE is a new charity based in the North East of England, created primarily to follow Jonny’s wishes by helping other sufferers of Epidermoysis Bullosa and their carers.
jonnykennedynortheast was launched in November 2006 by co-founders Eric Duffield(Trustee) Roger Stutter (Trustee) and Jonny's mum Edna Kennedy(Trustee) and the charity was offically registered in june 2007.
Our first aim was to set up a website which will create a community between the charity,the EB sufferers,their carers and others who support EB.
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