Epidermolysis bullosa Epidermolysis bullosa

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Ms Tess Mallos
Occupational Therapist
Sydney Children’s Hospital

Dr Kieran Moran
Senior Staff Paediatrician
Sydney Children’s Hospital
Randwick, NSW Australia

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What is epidermolysis bullosa?

Epidermolysis bullosa is a group of skin disorders characterised by the formation of blisters after even mild injury. It is due to a genetic defect which causes a weakness in fibres that link the various layers of skin.

Any injury to the skin will tear the fibres and make the layers of skin separate easily. The gap which forms then becomes filled with fluid and a blister forms. In the more severe forms of epidermolysis bullosa the blisters can be deep in the skin layer and healing leads to severe scarring. The mouth, nails, larynx, oesophagus and bowel may be affected.

The important issues throughout the school years will be to prepare the student with epidermolysis bullosa for the future. A productive and full life is possible given the opportunity, family support, educational opportunities and motivation.

There are three main types of epidermolysis bullosa. They are defined according to the way in which the disease is inherited, the ability of blisters to heal with or without scarring, and the layer of the skin that is affected. The three types of epidermolysis bullosa are:

  • This is the least severe type of epidermolysis bullosa and the effects of the disease may lessen as the child grows older.

  • It may be generalised or localised.

  • Blisters occur in a very superficial layer of the skin.

  • Blisters usually occur on the hands and feet, and heal without scarring.

  • EBS does not have the complications seen with the more severe types of epidermolysis bullosa such as poor growth, contractures or severe membrane scarring.

  • There are two forms of JEB, mild and severe.

  • Blistering is usually present at birth, and occurs mainly on the scalp, neck, mouth, trunk and legs. Teeth and nails may be affected.

  • Scarring does not occur, but large ulcers may be present on the areas mentioned and do not heal easily.

  • Blisters appear at birth on all parts of the body, as well as in the mouth, oesophagus (gullet) and eyes. The nails are often misshapen and trauma leads to the loss of nails.

  • Lesions heal slowly, with scarring which can lead to fusion of fingers and encasement of fingers and toes in a mitten of scar tissue.

  • Contractures occur at the joints.

  • Involvement of the gut leads to difficulty in swallowing, poor absorption of food and constipation. Growth is poor as a result.

  • Skin cancers may develop.

Teachers may be the first to suspect mild epidermolysis bullosa. If a student is seen to have easy blistering, parents should be informed and advised to contact their medical practitioner.

At the time of writing, there is no cure or specific treatment to control the disease. In the absence of a cure everything possible is done to maintain the physical capabilities of affected children, to develop their capabilities and talents and to help them achieve the best possible lifestyle.

Students and their families may seek advice and support from their nearest Epidermolysis Bullosa clinic.