People living with EB have fragile skin. It may blister and tear very easily, including the mouth and throat. Ask the patient or their family for advice. They are often the experts. The information on managing EB patients below does not replace advice from a qualified healthcare professional.

Consult their EB team/consultant before performing invasive procedures.

AVOID / CAUTION	ALTERNATIVES / TIPS
Pressure, friction or shearing forces	Use techniques, such as ‘lift and place’
Spreading blisters	Burst blisters with a sterile needle. Leave the blister cap in place. Cover with a sterile non-adherent dressing.
Adhesive dressing, tapes & ECG electrodes	If medically required, remove with a Silicone Medical Adhesive Remover or 50/50 White Soft Liquid Paraffin. Remove gently with a roll back technique, not by lifting the dressing.
Tourniquets	Squeeze limb firmly, avoiding shearing forces; if necessary, use over padding
Blood pressure cuffs	Place over clothes or bandages
Thermometers	Use a tympanic thermometer
Surgical gloves	Lubricate the fingertips, if necessary
Removing clothes	Use extreme caution; if stuck, soak off with warm water
Mattress	Use a non-alternating pressure relieving mattress, such as Repose
Airway suction	If necessary, use a soft lubricated catheter. If Yankauer suction is required in an emergency, use lubrication to the tip and no suction on insertion. Place suction catheter over a tooth to avoid stripping the lining of the mouth.
Opening eyes	Never force open; use a lubricant, if necessary
Swallowing	Check if they are taking food or medication by mouth. Liquid medications and a soft diet or pureed food may be appropriate. Cold or warm drinks may be preferable to hot.

Visit the DEBRA International website to download EB Clinical Practice Guidelines (CPGs), including a guideline for skin and wound care.

Download the EB CPGs