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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
To find essential information and tips to manage patients living with EB, please visit our EB patient management page.