Epidermolysis Bullosa (EB) is a genetic skin condition that 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) – This is the most common type and first becomes apparent in early childhood, although it can manifest in adulthood. Typical symptoms are painful blisters on the hands and feet or anywhere on the body
• Dystrophic EB (DEB) – This painful condition takes its name from the tendency of the blisters to heal with scarring. This can lead to painful joints, the 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) – This condition is split into two types:
  • JEB Generalised Severe (previously known as Herlitz JEB) 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

We’re here to help

Our staff are highly skilled in interventions and therapies to support clients with EB, while also providing guidance and support to their families.

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

Our carers 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. Whether it is assisting with personal care, household tasks and social interaction, we are here to help support your everyday routine and needs.