Voluntary Sector DEBRA DEBRA For people whose skin

Voluntary Sector DEBRA

DEBRA • For people whose skin doesn’t work – we do • The skin is “faulty” • It doesn’t do what it is meant to – the layers of skin don’t stick together

DEBRA • National charity – all through Britain • Epidermolysis Bullosa or EB • 5 000 people in Britain have this condition

EB • There are several different types of EB • There are 3 different types

EB • Genetic skin blistering • Fragile skin and, in some cases, other internal membranes and organs • Causes blisters, open wounds and sores • Just touching the skin cause this • Sometimes known as butterfly syndrome

EB • Can be fatal • Can shorten your life • Can be carried in parents genes – both mother and father • Inherited • No cure for this condition

EB • You cannot catch this from anyone • It is an inherited condition

Research and Development

Research and Development • Currently no cure • Doing research in biology and genetics • Gain better understanding which can lead to new approaches to diagnose and treat EB • Work towards the development of therapies (including possible gene-therapies, cell-therapies, drug therapies) • Understand the nature of wound healing and the development of skin cancer in EB, and seek to develop better treatments and prevention strategies • Help patients to manage their illness

Screening • You can be screened for this condition • If you carry the gene • Mother can have pre-natal diagnostic testing at 8 -10 weeks

Care and Treatment

Care and Treatment • • • Help to live with the condition Lance blisters Wear dressings Pain relief Medicines – (often going to toilet is sore) Wear natural clothing and shoes