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.

EB acquisita (EBA)

Although the symptoms and complications of EBA can be similar to those of the four types above, EBA is not inherited. It is an autoimmune disease, which does not usually appear until later in life. It is unknown exactly what causes it.

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EB INFORMATION & RESOURCES

All of the information found in this section (and more) is available for download in booklet, poster, and leaflet formats! Many are also available in different languages.