Information & recommendations for the EB Community regarding Covid-19
The current coronavirus (SARS-CoV-2; causing the Covid-19 disease) outbreak goes along with lots of questions and uncertainties, especially regarding people with chronic, rare diseases like EB.
Beneath, we have collected information, which may be useful for EB patients and their caregivers, as well as for healthcare professionals working with EB, during the current pandemic. The information will be continuously updated as new information as well as further translations are available.
Information Booklet on Covid-19 for EB patients
DEBRA International made a very informative booklet, together with EB healthcare professionals, addressing people living with EB. Please distribute this information among your patients.
Information Booklet on Covid-19 for EB healthcare professionals
The ERN-Skin put together the following recommendations and information for patients with rare skin diseases and the COVID-19. It is not specifically written for people living with EB, but it contains some additional useful information, also for healthcare professionals.
Emergency Information - Unplanned Hospital Stay
In case of an emergency an EB patient might be admitted to a hospital, where their history of EB is unknown. In this case the patient or relatives need to inform the medical staff immediately. The staff has to be aware of the fragility of the skin and other tissues. When the staff is properly informed on admission you can avoid injury later. The following information is part of the EB Handbook published by the EB House Austria. Please forward these information to your patients and ask them to keep a printed version ready to hand over to the hospital staff.
- English: Emergency Information - Unplanned Hospital Staypdf - 84 KB
- Español: Información en caso de Emergencia - Ingreso Hospitalario imprevistopdf - 110 KB
- Deutsch: Notfallinfo - Ungeplanter Krankenhausaufenthaltpdf - 121 KB
- Italiano: Informazioni in caso di emergenza - Degenza ospedaliera non programmatapdf - 106 KB
- Polski: Przyjęcie do szpitala w trybie nagłympdf - 122 KB
Video on anaesthetic procedure for a patient with EB
The EB team at Birmingham Children's Hospital has put together a series of short educational videos, one of them regarding the anaesthetic procedure for a patient with EB, which includes ventilation.
In the case that an EB patient gets infected with Covid-19 and requires ventilation, this video might be of help. Please refer to this video if hospitals treating EB patients contact you.
Completed EB Guidelines
Find here all completed Clinical Practice Guidelines for EB to download.
The EB Handbook provides a wealth of information and practical guidance for those living with the many challenges associated with EB.
DEBRA International is one of the few patient organizations worldwide that promotes the development of guidelines for clinical practice.