Lack of sleep, endless skin irritation, itchiness and pain, frustration, decreased self-esteem and quality of life. These are only some of the symptoms felt by those affected by eczema. While eczema is a very common skin condition affecting 1 in 5 children and 1 in 10 adults, there is currently no permanent cure, and available treatments can be ineffective, difficult to use and make performing daily activities a challenge.
Through interviews, surveys and monitoring of online eczema forums, previous research gained insight into the lived experience of those who suffer with eczema, as well as their carers, and the perspectives of some healthcare professionals. Patient quotes found in more than 200 published research papers inspired dermatology professor, Sara Brown (University of Edinburgh) and creative researcher, Beverley Hood (Edinburgh College of Art) to take these lived experiences beyond the sphere of academia and into the public domain using creative practice.
Using synthetic speech synthesis, professional voice actors, sound artists, and creative visualisation methods, this project aims to work with patient communities to find meaningful, thought-provoking ways to make the thousands of voices of those affected by eczema heard. Producing a digital archive of these powerful and moving quotes in different creative forms will raise awareness, promote discussion, reduce stigma and increase understanding of this condition, not only amongst academics to direct their research, but also for healthcare workers to guide their treatment approach, carers and the general public.
ASCUS is proud to be a collaborative partner on this three year project. Watch this space for updates on the developments of the work.
READ ABOUT the progress of this project below
MEET THE TEAM:
Prof. Sara Brown is a clinical academic dermatologist, caring for patients of all ages with a range of skin diseases, but specialising in eczema. Sara’s research focuses on understanding how a person’s genetic make-up predisposes to the inflammatory skin disease atopic eczema and associated systemic conditions. The ultimate aim of Sara’s work is to define targets for the development of new and better treatments for people affected by eczema, dry skin and related allergic conditions.
Beverley Hood’s creative research work interrogates the impact of technology on the body, relationships and human experience through the creation of digital media and performance arts projects, and writing. She has extensive experience of collaborative work and project development involving a range of practitioners, including medical researchers, scientists, writers, technologists, dancers, actors and composers. Beverley’s work has been performed, screened and exhibited at leading international venues.
Dee Davision is the Public Engagement Manager at the Institute of Genetics and Cancer. She helps the staff and students within the institute to develop their science communication, public engagement skills and confidence so that they can start conversations and share their science.
Dr Alison Mayne is a researcher in everyday craft and wellbeing, with additional interests in digital communities and design for older people. She holds awards from Women’s History Scotland, The Pasold Fund and is a University of Glasgow 2020-22 Visiting Library Fellow, supported by the William Lind Foundation.
Eczema Outreach Support (EOS) is a charity that supports a membership of over 3000 families and individuals affected by eczema, providing a high standard of information, activities and peer-to-peer mentoring. In this project, EOS will enable an independent group of people affected by eczema to provide consultancy and co-development of the work for future public distribution and exhibition.
Dr Keira Tucker is the ASCUS Manager with a background in microbiology and experience in the delivery of public engagement projects. She is overseeing the communication of the project to public facing audiences.
This work is funded by the ScotPen Wellcome Engagement Award.
