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Epidermolysis Bullosa
Home Care Programme

Physical care

Skin care

General

In order to maintain a good skin condition a cream or ointment is applied. Indifferent creams or ointments can be used. Skin of poor condition is often dry. This may cause itch.

The main aspect of skin care is to keep the skin `lubricated' because dry skin is sensitive to blistering and it prevents or treats the itch.

For the treatment of skin and itch Cetomacrogol Cream FNA (Dutch pharmacy), Cold-Cream FNA, Vaseline-Lanette Cream FNA, Zinc oxide ointment 10% FNA and Calendula® ointment have proven their worth. Persistent itch is also treated with ointments containing corticosteroids. Which ointment or cream is most suitable for a patient is a matter of trying out; what works well for one patient might have no effect on the other.

To protect the skin from bumping and rubbing, linen waste or lint is generally used. Especially those locations on the skin that are most vulnerable to blistering are protected. The dressing should not be allowed to rub or pinch.

Make-up

The application of make-up is discouraged and if used, especially around wounds and a sensitive skin, it should be used cautiously.

Blister care

Blisters are usually burst daily so the fluid can flow out and so that the blister does not become larger and the pain can be reduced. The blister is opened around the rim by bursting it with a sterile needle or snipping the roof with sterile scissors. Blister roofs that are still clean do not have to be removed. Purulent roofs should be snipped. It is recommended to have the fluid under the blister occasionally tested (culture) for the presence of micro-organisms.

After the roof of the blister is burst or snipped the blister is dressed with waste linen on which vaseline has been put to prevent adhesion to the skin or with a synthetic gauze (for example Adaptic®, Mepitel®). The dressing is then secured by the aid of Elastofmull Haft®, Mollelast® or by using clothing made of lint (see chapter Materials & Medication: Dressing).

Wound care

Wound care focuses on a quick healing process. Sometimes this requires a cream or ointment which moisturizes the wound a little, on other occasions a dehydrating ointment is required. The choice of a specific ointment or cream on the wounds is often made by the patient's doctor. However, the same holds here that it is often a matter of simply trying out which works best. In the treatment of wounds Zinc oxide 5% in Cetomacrogol Cream FNA and Vaseline compounds have proven their worth (see chapter Materials & Medication: Ointments and creams).

Sometimes wounds are dabbed with nonwoven gauze that has been soaked in physiological saline or in camomile tea.

Wounds are subsequently covered to protect them against micro-organisms, bumping and rubbing. They are also covered in order to prevent the cream or ointment which has been applied from `disappearing'.

Care of infected wounds

The care of infected wounds involves the treatment of the infection and a quick healing process of the wound. This requires an antibiotic ointment or cream. Bactroban® Cream, Flamazine® Cream and Fucidine® Cream have proven their worth (see chapter Materials & Medication: Ointments and creams).

For infected wounds, Eusol® Paraffin or nonwoven gauzes that have been soaked in acetic acid 1% are also used (determined by the nature of the infection). Disinfecting ointments such as Chlorhexidine Cream may also be used. Wound exudate of infected wounds should be tested regularly (culture) for the presence of micro-organisms.