Despite many having heard of the condition, there is limited understanding of what it means to live with eczema on a daily basis. Due to its prevalence among children, most scientific research and clinical treatment plans are geared towards managing eczema as a young person, leaving many adults living with the condition feeling as if they must suffer in silence.
In 2019, researchers from the London School of Hygiene & Tropical Medicine (LSHTM) joined forces with sculpture artists Peter Hudson and Julia Vogl, and Patient Representative Amanda Roberts, to increase understanding of the way eczema impacts life as an adult.
鈥淚鈥檝e been looking after patients with eczema for years, clinically,鈥 said Sin茅ad Langan, Professor of Clinical Epidemiology at LSHTM, Consultant Dermatologist at St John鈥檚 Institute of Dermatology, Guy鈥檚 hospital, London, and commissioner of the project. 鈥淏ut that doesn鈥檛 give you a sense of what the lived experience of having eczema is.鈥
There is no cure for eczema, only ways of managing it with skincare routines, medicines, and mitigation techniques that can be time-consuming and expensive. The itching and discomfort can be highly debilitating, affecting a person鈥檚 sleep, concentration, mood, and personal relationships.
Supported by the Wellcome Trust, the project involved inviting 30 adults living with eczema or with indirect experience of eczema to a series of creative workshops to talk about what it鈥檚 like to manage the condition and the way it can impact every part of life.
鈥淚t was just nice to talk, because throughout my whole life, I鈥檝e suffered alone. To live with it on a daily basis affects so much of one鈥檚 personal life,鈥 said Julie, a workshop participant. 鈥淚 think a lot of people think eczema is quite superficial [鈥 and it doesn鈥檛 affect life too much. Quite frankly, it鈥檚 the opposite.鈥
Following the conversations, Peter and Julia worked with the group to create individual boxes representing their own personal experiences of living with eczema. Each person was able to express candidly how eczema impacts all areas of their life, and the resulting psychological effects.
鈥淎s an artist, I work with data, and this piece is really a different type of data,鈥 said Julia. 鈥淓very box is made by an individual, but together, they make this collective picture.鈥
The individual boxes were then assembled as a giant sculpture, bringing together the unique experiences of the workshop participants to give a true and honest insight into what it is like to live with the condition. Participants used words such as 鈥渉orrible鈥, 鈥渦ncomfortable鈥, 鈥渄epression鈥, 鈥渘ever ending鈥 and 鈥渦npredictable鈥 to describe their experiences, but they also spoke of hope, friendship, and solidarity through meeting others that understand the challenges they face.
Where can you see the Colouring Adult Eczema exhibition?
Having first debuted at the British Association of Dermatologists conference in 2022, the Colouring Adult Eczema sculpture is now going on tour around hospitals in the UK to bring greater awareness to the condition. Find it at a hospital near you in the coming months:
- Mar 2 鈥 April 11 鈥 Derby 鈥 Royal Derby Hospital, University Hospitals Derby and Burton NHS Foundation Trust
- April 12 鈥 May 23 鈥 Newcastle 鈥 Royal Victoria Infirmary, Newcastle upon Tyne Hospital NHS Foundation Trust
- May 24 鈥 June 27 鈥 Nottingham - Nottingham NHS Treatment Centre, Queen鈥檚 Medical Centre, Nottingham University Hospitals NHS Trust
- June 28 鈥 Aug 1 鈥 Burton 鈥 Queen's Hospital Burton, University Hospitals Derby and Burton NHS Foundation Trust
- Aug 2 鈥 Sept 5 鈥 Mid Cheshire - Mid Cheshire Hospital, NHS Foundation Trust
- Sept 6 鈥 Oct 18 鈥 Bristol 鈥 UHBW Arts & Culture, University Hospitals Bristol and Weston NHS Foundation Trust
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