José Duipmans:


Jose welcomed the participants; after making acquaintance with each other, everyone could exchange email addresses. In this way it is easier to get in contact with each other, and share experiences (possible through the international EB-nurses forum too).  A PowerPoint presentation about wound healing was shown as introduction to the more practical part of this meeting.

EB and adolescents

Jennie Hon (EB-nurse specialist UK) organizes once a year an outing for EB-youngsters between 16 and 19 years old. The reactions during this week are very positive; the youngsters love to be together and share their stories. It became clear that there is an information-gap between the knowledge about EB-babies and children and the information about EB youngsters growing up .So the idea was developed to compose a guideline for this target-group with not only practical advices but also experiences concerning sexuality and sexual relations. By means of a questionnaire youngsters can (anonymous) tell what's bothering them.


Wound care

All participants got a copy of Jackie Denyers article: Woundmanagement for children with EB "and a copy of: "Principles of wound care in patients with EB", (Irene Corrales, Alan Arbuckle e. o).

And then it was time to get into the practical part of this forum. There was a possibility to use 2 Lotus "patients "for this practice with artificial wounds at difficult to reach parts of their body. The forum-participants were divided in little groups; groups who bandaged the wound and others who watched and asked questions.

Looking back at this practical part everyone had the opinion that it was a highly teachable and significant training and experience. It was also very evident that there were a lot of differences between the countries; in some countries there is almost no experience in wound caring, or even worse, there is a total lack of the material that is needed in this case. In Australia a video is produced with examples of wound dressing: Louise Stevens, BrightkSky Australia (National Epidermolysis Bullosa Dressing Scheme)

Jose Duipmans is planning to collect all the experiences of this forum and eventually publish them in a guideline for wound caring .This idea can be a topic in the Nurse Forum of DEBRA International.

The future of the Nurses Forum

On behalf of Heidi Silseth (Norway) Jose asked the audience if there still is a necessity to continue this Forum. There is not much happening at this moment within this forum. Yet all the participants had the opinion that the underlying idea for this forum is a good one and can be very useful. But the way the forum is organized and is accessible could be better.
It would also be convenient if the different fora about nursing and EB could take place on different dates; it would create the possibility to visit all these different meetings.

The impact of EB on nurses

Everybody agreed; taking care of patients with EB is very emotional, stressful, nerve breaking and costs a lot of mental energy. Getting a burn-out is one of the risks in this profession. The empathy your direct management can show to you is very important, and psychological support can be necessary too: how to survive under all this pressure.

Besides that it is, being a professional yourself, sometimes complicated to talk about your stress or asking for help. But you should; you can't cope with it at your own. Jose Duipmans will suggest to John Dart if the impact on nurses of taking care of EB-patients can be put down for consideration at t he next International Debra congress in 2012.


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