Caring for people with EB

Epidermolysis Bullosa (EB) is a genetic skin condition which causes the skin to blister and tear at the slightest trauma or friction.

Those born with EB are often termed ‘butterfly children’ as their skin is as delicate as the wings of a butterfly.

There are around 27 variants of EB but the three main types are:

  • EB Simplex (EBS) – the most common type – around 70 per cent* of people with EB have EBS. The condition often first becomes apparent in early childhood although it can manifest in adulthood. Typical symptoms are painful blisters on the hands and feet although blistering can occur anywhere on the body
  • Dystrophic EB (DEB)  – around 25 per cent* of people with EB have DEB. This painful condition takes its name from the tendency of the blisters to heal with scarring. This can lead to painful joints, fusion of the fingers and toes and a tightening of the membranes in the mouth and a narrowing of the oesophagus causing problems with eating and swallowing
  • Junctional EB (JEB)  – around 5 per cent* of those with EB have JEB. This condition is further split into two types:
    • JEB Generalised Severe (previously known as Herlitz JEB) affects around half of those diagnosed with JEB and as the name suggests the condition is so severe that it is usually fatal, with only a few infants surviving to the age of around two or three
    • JEB Generalised Intermediate (Non-Herlitz JEB) is not a life limiting condition but does, nevertheless, lead to life-long pain and disability

At Almond Care, our staff are skilled in the use of interventions and therapies to assist clients with EB as well as supporting their families.

Including treatment of blisters and dressings, manual handling, pressure sore prevention, PEG feeding support and nutrition management.

Carers also receive client-specific training to ensure expert delivery of their bespoke care package.

Our support goes beyond day-to-day clinical care. We assist clients in achieving maximum independence and quality of life, for example by assisting with personal care, household tasks and social interaction, at a level tailored to the preferences of the client and their family.

For a free, no-obligation discussion about our UK complex care in the home for children and adults with Epidermolysis Bullosa, please click here or call 024 7610 2333.

* Estimates according to NHS