• 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

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Caring for someone with EB

"Living with EB means living with a special condition. At the same time, it also means leading a very normal life with ups and downs, successes and setbacks, wishes and desires, strengths and weaknesses. As each form of EB comes with its own specific problems and every patient has a different personality, it is impossible to make any universally valid statements. Therefore, this section of the website may only provide information on the tasks and challenges you may face in living with EB or caring for someone with EB, not all of which are purely medical problems." (Anja Diem, specialist EB medical doctor)

Cover "Life with EB" (Fine, Hintner) and Cover "Occupational therapy in EB (Prinz, Weiß)

The full article 'Living with EB - Impact on Daily Life' (excerpt from: Life with Epidermolysis Bullosa (EB) is available for download here. Find more information about this book and other specialist EB literature in the section EB Literature.

One other useful resource is a specialist book on Occupational Therapy in EB, published in spring 2013. Occupational therapy tools and interventions can help alleviate a number of accompanying complications and symptoms of EB, enhance self-care, and improve quality of life in general. Due to its practical approach, this book is not only targeted at doctors and health care professionals but also comprehensible and useful for patients and their families.

Screenshot of the website www.eb-handbook.org

A new online resource, the so-called 'EB Handbook' is directed towards everyone that is directly affected by Epidermolysis bullosa (EB) as well as their families. This information is intended for all those who have to deal with all the various challenges which are connected with EB. By printing the PDF documents you are interested in, you can create your own individual information folder.

The information in this section is aimed at people with EB, caring relatives and lay people; you may also have a look in the Medical professionals section for our Best clinical practice guidelines (BCPG) which are currently in development.

DISCLAIMER

The information on this website is not intended to replace professional health advice. The information is provided for informational purposes only. Although every reasonable effort has been made to ensure that the information on this website was accurate at the time of publication, we accept no responsibility for any errors, omissions or misleading statements on this site or on any site which you may be able to access through a link on this site.

The use or distribution of the information on the web is at the sole discretion of the user or any subsequent third party and DEBRA does not take any responsibility for such use or consequences.