Epidermolysis Bullosa
What is EB?
Epidermolysis Bullosa (EB) is a group of genetic skin conditions which cause the skin to blister and tear at the slightest touch.
Those born with EB have skin so fragile they are called ‘butterfly children’ – their skin is quite simply as fragile as the wing of a butterfly.
Painful open wounds and sores form where this exceptionally fragile skin is damaged – in some cases, internal linings and organs are also affected. Complications as a result of secondary infection and extensive scarring are factors that people living with EB often have to face.
Why are we are raising awareness ?
We are currently raising awareness of this condition as my self, my mum and my son all have the condition. However since having my son me and my partner was opened up to the reality of how little awareness there is through the ignorance and abuse we received from people unaware of the condition. This then motivated us to raise awareness to help others who are receiving the same abuse at a time that is hard enough to deal with on a daily basis.
We know everyone cannot afford to donate and we appreciate that , we also appreciate any money that can be donated. However all we ask is that you get yourself informed about Eb and pass your information on to raise the awareness.
We are also current selling badges and bracelets to raise money for the charity that supports us. The bracelets are £3 and the badges are £2. Please contact Sophie Louise Green on face book or via her mobile on 07506766073.
If you would like any further information on the condition please go On the Debra website at https://www.debra.org.uk/
