Challenges and supports for life with EB - Debra Ireland

Challenges and supports for life with EB

DDr Gudrun Salamon of Sigmund Frued University, Vienna, has conducted research on what is challenging and what is helpful for those who live with EB and their families. This research was conducted across several countries, with Debra Ireland funding an Irish-only section of the research to investigate these factors within the Irish EB population. Interviews were conducted with adult volunteers who either lived with EB themselves or had a family member impacted by EB.

About the project

About our funding
  • Primary Researcher: DDr Gudrun Salamon
  • Institution: Sigmund Frued University, Vienna, Austria
  • Type of EB: All EB types
  • Funding amount: Full study funded by Debra Austria, Irish-only analysis funded by Debra Ireland
  • Project length: 1 year
Final progress summary

Due in 2024

About our researchers

DDr Gudrun Salamon currently works as a postdoctoral researcher and lecturer at the Department of Psychology, Sigmund Freud University Vienna, and as a lecturer at the Department of Computer Science, Vienna University of Technology. Her research focuses on quality of life, health psychology and psychosomatics, therapeutic methods, psycholinguistics, perception, user modeling, and other topics within the interdisciplinary field in between computer science, linguistics and psychology.

Researcher’s Abstract

Grant Title: Burdens and helpful aspects for achieving and maintaining quality of life with epidermolysis bullosa

Apart from the medical aspects, quality of life is a crucial factor in the well-being of those living with a chronic condition, such as EB. The balance between individual burdens and resources is essential. In the study, a special focus is placed on what was or still is perceived as helpful assuming that EB does not only have an impact on those affected themselves, but also on their relatives.

Since summer 2019, DDr Gudrun Salamon, researcher in the faculty of psychology at the Sigmund Freud University Vienna has been leading a research team of six people on the project of “Burdens and helpful aspects for achieving and maintaining quality of life with epidermolysis bullosa”.

In cooperation with DEBRA International, DEBRA Austria, and the EB-Haus Austria, the team are currently conducting an online survey on burdens and resources in EB with the international EB population (in German and English).

Participation in the study will provide valuable experience and will help the team to build a better understanding on burdens and helpful factors in dealing with EB with the aim of being able to provide better support to people living with EB as well as their relatives.

Researcher’s final progress update

Due in 2024

As researchers, we're dedicated to understanding the challenges and support systems crucial for individuals and families affected by Epidermolysis Bullosa (EB). Our collaboration with DEBRA International, DEBRA Austria and Debra Ireland allows us to gather valuable insights through an online survey. By identifying burdens and helpful factors, we aim to provide better support and improve the quality of life for those living with EB and their loved ones.

DDr Gudrun Salamon

Learn more about the research projects we support

It is our role to increase EB research both in Ireland and across the globe.

We have funded and supported many research initiatives, contributing to a better quality of life for people living with EB.

We work closely alongside researchers, DEBRA International, clinicians and people linked in with us for all our research projects.

Learn more