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Emergency information for EB patients
This page shares essential contact information you will need if you are in an epidermolysis bullosa (EB), or non-EB related medical emergency, plus key EB information that non-EB specialist healthcare professionals must know when treating you.
EB urgent and emergency contacts and support
In a medical emergency (if you are seriously ill, injured, or there is a risk to your life) always call 999 or go to your nearest Accident & Emergency (A&E) department. To find details of your nearest A&E department please visit the NHS website.
Urgent healthcare
For urgent healthcare – EB or non-EB related – dial 111 or contact your local GP. If you don’t have their contact details, please visit the NHS website.
Medical Information cards
Because EB is such a rare condition, there is no guarantee that the clinician or GP treating you will have heard of it or understand it. They may require additional specialist EB information and advice, and they may want to contact an on-call dermatologist or a member of the specialist EB healthcare team.
To ensure that they have the right information and contact details we recommend that you always mention that you have EB when speaking to a healthcare professional, even if the reason you are seeing them isn’t directly related to your EB. This will help ensure that they and their teams make the necessary allowances, e.g., avoiding sticky plasters, avoiding sliding when transferring you, using caution when removing any clothing etc.
We also recommend that you always show your ‘I have EB’ card.
If you don’t have one or you’d like a luggage tag version, you can request a card by contacting the DEBRA UK Membership Team.
Alternatively, you can download the relevant card below and either print it off or save it as an image on your phone. Please pick the one related to the EB healthcare centre that you are under. If you’re under the care of a regional EB healthcare team or other local healthcare service, then you can fill in the relevant details on the blank version.
Download your Medical Information card
Print or save your card on your phone for emergencies
“Thank you for sending my ‘I have EB’ card. When I showed it at a recent medical appointment, he took my EB seriously. In all my life this is the first time this has happened.”
Anon
Please remember that the DEBRA EB Community Support Team is available for non-medical support and to help signpost you to appropriate healthcare services Monday-Friday 9am–5pm.
EB specialist healthcare services
For more information and contact details for the four NHS EB healthcare centres of excellence and the Scottish EB service, please visit our page on EB specialist healthcare.
If you would like more information, or support with a referral to an EB specialist healthcare centre, please contact our EB Community Support Team.
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.
| 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 which have been 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.