Epidermolysis bullosa

Also called EB or Butterfly skin

Epidermolysis bullosa is a group of rare inherited conditions in which the skin is extremely fragile. Even gentle rubbing or minor injuries can cause painful blisters and wounds. Some types also affect the inside of the mouth, the eyes and the gut. It is usually noticed at birth or in early childhood.

Last updated Nov 9, 2026

What it is

Severity ranges from mild blistering on the hands and feet to severe forms affecting large areas of skin and internal organs.

There is no cure. Care focuses on wound care, preventing infection, pain relief, nutrition and protecting the skin. Specialist EB teams provide support.

Common signs

  • Blisters from minor friction or injury
  • Wounds that are slow to heal
  • Blisters inside the mouth
  • Thickened skin on the palms and soles
  • Nail changes

How it is usually diagnosed

  • Skin biopsy with special tests
  • Genetic testing

Records worth keeping

Keeping these together makes each appointment easier, especially when you see a new doctor:

  • Genetic and biopsy results
  • Wound care plans and dressing details
  • Specialist team letters
  • Nutrition and growth records

Questions to ask your doctor

  • Which type of EB is it?
  • How should we care for wounds and blisters?
  • What specialist support is available?

When to get help right away

Call 112 or go to the nearest emergency department if you have:

  • Signs of a serious infection, such as spreading redness, fever or feeling very unwell, or difficulty swallowing or breathing

This page is general information. It is not a diagnosis and does not replace a doctor who knows your history. Medfold keeps your records organised; it does not interpret them.

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