EB patient management for healthcare professionals
People living with all types of EB have very fragile skin that can blister or tear with the slightest knock or friction. Some EB patients may get very painful blisters on their hands and feet only, whereas others may get blisters on any part of their body including their eyes, and inside their mouth and throat.
It is important that you ask the patient, their family, or carer for advice about their condition as they are often the experts. The information on managing EB patients below does not replace advice from a qualified healthcare professional.
IMPORTANT: Please consult the patient’s EB healthcare team/consultant before performing any invasive procedures.
Managing EB patients
| Avoid/caution | Alternatives/tips |
| Pressure, friction, and shearing forces | Use techniques such as ‘lift and place’. |
| Spreading blisters | Burst blisters with a sterile needle, leave the blister cap in place and cover with a sterile non-adherent dressing. |
| Adhesive dressing, tapes & ECG electrodes | If medically required, remove dressings with a silicone medical adhesive remover or 50% liquid paraffin, 50% white soft paraffin ointment. 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. |
| Airway suction | If necessary, use a soft lubricated catheter. If Yankeur 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 the patient is 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 drinks. |
As open wounds or raw skin can become infected and then require urgent treatment to prevent further pain and damage, it is crucial to be careful in preventing infections for people with EB.
For more guidance on infections, such as indicators of infection and what to do if you see signs of one, please visit our ‘About EB’ page.
For more information about EB skin and wound care, please download the EB Clinical Practice Guidelines.
EB Clinical Practice Guidelines (CPGs) for healthcare professionals
CPGs are a set of recommendations for optimal clinical care based on evidence gained from medical science and expert medical opinion. They are designed to help healthcare professionals understand how to treat patients with EB.
DEBRA International, the central body for a worldwide network of over 50 national DEBRA/EB support groups, including DEBRA UK, has produced several guidelines, many of them funded by DEBRA UK (denoted by an asterisk*). To find out how these CPGs were created, please download the EB CPG fact sheet.
Patient orientated CPGs
The EB CPGs were created specifically for healthcare professionals managing EB patients; however, there is also a library of patient orientated versions available for people living with EB, their family members, and carers. These can be found on the DEBRA International website.
If you are a healthcare professional with experience of managing EB patients and you would like to get involved with the development of future EB CPGs, please contact us.
Page published: October 2024
Last review date: March 2025
Next review date: March 2026