Best Practice Care for Infants with Suspected EB

‘Epidermolysis Bullosa (EB) is a rare genetic disease.  It is characterised by extremely fragile and blister prone skin.  Management of the disease requires frequent application of specialised dressing and bandages to reduce skin damage and the risk of infection. The cost of dressings can be extremely high, particularly for those with more severe forms of EB. There are many different forms of EB.  The three main types are based on which level of skin is affected.

The main types are called:

1. EB Simplex – This is the most common form of EB. It is also generally the mildest form. The skin splits, forming blisters in the very top layers of the skin. There are various types of EB Simplex which can all look different.

2. Junctional EB – The layer of skin involved here is the middle layer. An abnormality here means that the blisters and erosions are deeper than in EB Simplex. Some different forms of this type are more severe than others.

3. Dystrophic EB – In this type of EB the skin is fragile in the deepest layer. The term ‘dystrophic’ refers to the scarring that can occur following healing of the blisters and erosions. The appearance also changes depending on type.’

In March 2014 the Best Practice Care of Neonates with Suspected EB   was released as part of the  National Neonatal EB Box Initiative!   A copy of this document is enclosed for your information. This document is a must read and covers  topics ranging from dressing products, management of clothing and monitoring devices for these infants who are so at risk of infecton and injury!

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