WHAT IS EB?
EB is a group of rare disorders with many genetic and symptomatic variations. It comprises four main types - EB simplex (EBS), junctional EB (JEB), dystrophic EB (DEB), and Kindler EB (KEB), with more than 30 subtypes. All types of EB are characterised by fragility of the skin and mucous membranes that blister and tear from mechanical friction or trauma. There are a number of secondary illnesses and manifestations that require treatment from a range of medical specialists. In the more severe cases, patients succumb to the condition by their third decade of life, while in the most severe cases mortality occurs in the first few months of life. While there is very promising therapeutic development occurring today, there is no treatment or cure for the overall condition. Symptom relief like pain management, wound care, and preventative bandaging are the only treatment options available.
This EB infographics booklet is a quick-reference guide to all you wanted or needed to know about the key aspects of what EB is, the symptoms and complications of the different EB types, care practices and who is involved, how EB is inherited and diagnosed, background on EB research and clinical trials, and everyday life with EB and how to raise awareness. The booklet is for anyone with EB or caring for someone who does. It is also useful to share with family, friends, teachers, colleagues, the general public, in fact anyone you need to in order to help explain what EB is.
OTHER LANGUAGES
O que é EB? infográfico epidermólise bolhosa
Wat is EB? epidermolysis bullosa - infografieken