The mainstay of EB care is meticulous daily wound and skin care.

Dressing regimes are very individualized. Many different ways work. One regime doesn’t fit all.

See ‘Care of the newborn’ for more details. The general principles are:

• Blisters should be popped with a sterile needle – this stops them getting bigger, improves comfort and promotes healing.
• Cleaning the wound reduces the risk of infection. This is more likely in large wounds, wounds with lots of dead tissue, and patients with significant malnutrition.
• Dressings are applied to promote wound healing, protect from trauma, and reduce pain. For the contact layer (the layer that lies against the skin/ wound), it is important to use a product that will not stick to and damage the skin, causing further bleeding when removed. These products can be expensive. Debra HK can help with costs.

Bathing in tap water is generally fine in Hong Kong; you can boil it first if preferred. Some use saline as it reduces the pain, it can be prepared at home (half a tablespoon of salt per litre of water). Using sterile saline is unnecessary for general bathing. Other practices described by other carers around the world include:

• Dilute bleach (2 teaspoons per gallon) or dilute vinegar (usually 5% acetic acid, diluted 1 part vinegar to 19 parts water) to reduce bacteria.
• Bleach and vinegar should be rinsed off with water or saline afterwards. A watering can is useful as a hand shower.