• Help people with EB

    Your support of DEBRA International or a national EB group enables us to provide the best quality of life for families and individuals affected by EB.

Donation Account: IBAN AT65 6000 0005 1004 5254, BIC BAWAATWW, DEBRA International, Am Heumarkt 27/1, 1030 Vienna

donate now

31.03.2014

A guiding handbook for people living with EB

In another great initiative from our colleagues in Austria, Dr. Anja Diem, Dr. Katharina Ude-Schoder and Mag. Brigitte Sailer, BA (all of the EB House in Salzburg) have developed an online EB Handbook for people living with EB.

This handbook has been created to help people directly affected by EB deal with the many challenges that the condition brings. It provides an overview of the different types of EB, along with advice on a variety of topics, including managing pain, caring for newborns and eye care. It also provides access to a beautifully written chapter on everyday life with EB, which tackles a range of topics, including clothing, playing sports and vacations and discusses issues which might arise at each of the major life stages.

The EB Handbook is not intended either to replace medical advice or to act as an alternative to clinical practice guidelines. Instead it provides a gentle and informative guide to families living with EB, based on the knowledge acquired by the experts involved, over their many years spent treating people with EB.

Much of the EB Handbook is currently a work in progress but it will be further developed and updated over time. It is available in German, English and Italian. Please have a look at the website and share the link with families who might benefit from it.

Avril Kennan, DEBRA Ireland

Screenshot of the homepage of the EB Handbook