EB information for professionals
Care guidelines
- Care of a newborn baby with epidermolysis bullosa[pdf] 353KB
- care of a child or young person with epidermolysis bullosa in hospital[pdf] 378KB
- Care of child or young person with epidermolysis bullosa in theatre[pdf] 264KB
- EB information booklet for parents [pdf] 398KB
- EB Transition - Parent leaflet [pdf] 1MB
- A Practical guide for caring for a baby with Fragile Skin [pdf] 570KB
Birmingham EB Severity Score (BEBS)
Electronic version of the Birmingham EB Severity score (BEBS)
Hints for using e-BEBS
You can save this Excel file to a Microsoft Windows-based PC, and then resave it for each patient.
If you have trouble opening the file, please check the following requirements:
- Microsoft Excel 2007 or above with support for XML
- Macros enabled in Excel
If your browser prompts you to save it as a zip file, just change the extension on the filename from '.zip' to '.xlsm'.
Any other problems or comments, please feedback to murtaza.khan@nhs.net
Educational EB videos for professionals
Please note: these videos contain footage of hand surgery, tooth extraction, patients under anaesthesia and other clinical procedures and are intended as an educational resource for professionals only.
- Anaesthetic procedure for a patient with EB (9 minutes)
- Balloon dilatation of the oesophagus in EB (4 minutes)
- Dental surgery for an EB patient under general anaesthetic (5 minutes)
- Hand surgery for EB (9 minutes)
- Laparoscopic Gastrostomy in EB (5 minutes)
- Lecture: reasons for consanguineous marriage among the Muslim community
- Skin care – bathing a child with EB, introduction (less than 1 minute)
- Skin care – bathing a child with EB, preparing the dressings (1 minute)
- Skin care – bathing a child with EB, preparing your equipment (2 minutes)
- Skin care – bathing a child with EB, removing dressings and bathing your child (2 minutes)
- Skin care – bathing a child with EB, skin care and dressings (6 minutes)
- PowerPoint (to be used alongside the short instructional videos on dressings, blisters and bathing): Practical guide for caring for a baby with fragile skin (EB)[pptx] 4MB