Kids Health Info

Epidermolysis bullosa

  • Epidermolysis bullosa (EB) is the name given to a few genetic diseases that cause fragile skin. Because the skin is so fragile (tender), it can be injured easily and cause blisters to form. If these blisters become infected, they can cause serious problems. Some people will have a few blisters while others will have a lot. The blisters are most often found on the feet and hands but can also form inside the mouth, the oesophagus (the tube that allows food to go from the back of the mouth to the stomach), in the stomach and the bladder. More severe EB can be found in the teeth, nails, hair and other parts of the body.

    Epidermolysis bullosa happens when one of the important skin structures is decreased or totally missing. The loss of this skin 'glue' makes the skin weak.

    Currently, there is no cure for EB. Many types are well controlled and many patients with EB lead normal lives. Unfortunately, there are several rare types that can cause death in infancy, or early adulthood.


    EB is a rare disease, but some types of it are more common than others. The symptoms usually appear in babies and toddlers. Often there is a family history of the condition, but this is not always the case. It is estimated that less than 1 in 1 million children has some form of EB.

    Types of EB

    There are many different names for the different types of EB. The three main types are based on which level of skin is affected. The 3 types are called:

    EB simplex:

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

    Junctional EB:

    The level of skin involved in junctional EB is the middle layer of the skin. An abnormality here means the blisters and erosions are deeper than in EB simplex. Some forms of this type are more severe than others.

    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 the on the type.

    Signs and symptoms

    • The key feature of all types of EB is that the skin is fragile, leading to a tendency to develop blisters in the skin after mild trauma (injury, hits, falls).
    • Sometimes the mucosal membranes (e.g. mouth, gums, throat and stomach etc) are also affected.
    • Generally, the deeper the blistering, the worse the disease - but this is not always the case.
    • The blistering and sores can be painful. In many cases, they leave scars when they heal.
    • The wounds heal slowly and can become infected.
    • Teeth, nails, hair and eyes can also be involved in the more severe types.
    • Nutrition problems and poor growth can also occur, particularly if the blisters are in the oesophagus or stomach. Blisters in these areas can make it painful to eat. 
    • In dystrophic EB, there is a higher chance of developing skin cancers in areas of repeated injury.


    • Your doctors will be able to specifically advise you on the type of EB your child has, and organise the tests and treatment needed for their care.
    • Depending on the type of EB and where it is on or in the body, various health professionals may be involved in caring for your child. These may include dermatologists, gastroenterologists, geneticists, dentists, dietitians or nutritionists, occupational therapists, specialist nurses, social workers and plastic surgeons.
    • The main treatment for EB is good wound care. This assists healing and helps to prevent infection. Your child's doctor will be able to advise you on the appropriate wound care for your child.

    Preventing blisters

    • Wear soft clothing to avoid rubbing blisters.
    • Try not to get too hot.
    • Wear soft mittens at night to prevent scratching.
    • Use sheepskin or foam padding on surfaces that may cause friction, e.g. chairs, beds, infant car seats.

    Treating infection

    If you get an infection, your doctor may:

    • recommend an antibiotic cream
    • recommend antibiotics
    • recommend a special covering on blisters that won't heal.

    Care at home


    • Children with EB, like all children, are bound to injure themselves in everyday activities. However, it is important to allow them to feel normal, play, and have fun.
    • Protective clothing such as kneepads, helmets etc should be worn when doing any risky activities such as bike riding, skateboarding or rollerblading.

    Wound care

    • Blisters should be popped with a sterile needle as this will make your child feel more comfortable and will allow for better healing. Once popped, the roof of the blister should be left on the skin to improve healing. Allow blisters to drain and then put on an appropriate dressing to promote healing.
    • There are many types of dressings available for use on wounds, and your doctor can advise you about these.


    • There is no specific diet needed. However, if the condition affects the gut or there is poor growth, your child's diet may need to be supplemented with nutrients such as iron.
    • In some cases, soft foods may be needed to help stop damage to the lining of the gullet and stomach.


    Contact your doctor if your child:

    • is not gaining weight as appropriate for their age
    • is having difficulty swallowing
    • has wounds that are not healing, or that show signs of infection.

    Key points to remember

    • EB is a genetic condition which results in the loss of one of several structures of the skin, that is important for the skin's strength.
    • It is hereditary, but it is not contagious.
    • It is not related to diet.
    • At the moment there is no known cure. It is hoped that a cure may be possible in the future.

     More information

    Please note: These websites contain information that may not be relevant to your child, depending on the type of EB they have. Many websites are aimed at people with the most severe types of EB, and may be upsetting to some people.


    Developed in consultation with the RCH Dermatology Dept. First published 2004. Updated November 2010.

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