Researchers at the Florence Nightingale School of Nursing and Midwifery, at King's College London, have developed a groundbreaking new garment for patients who suffer the rare skin condition Epidermolysis Bullosa (EB).
(Media-Newswire.com) - Researchers at the Florence Nightingale School of Nursing and Midwifery, at King’s College London, have developed a groundbreaking new garment for patients who suffer the rare skin condition Epidermolysis Bullosa ( EB ). Skinnies WEB™, which have been designed in partnership with EB patients, carers and clinicians, a clothing designer and a manufacturer, will help to reduce the burden of EB wounds on a day-to-day basis and therefore greatly improve quality of life for patients. The project was awarded the 2013 Guardian University Award for Outstanding Research Impact last week.
Epidermolysis Bullosa is a rare inherited skin condition that affects an estimated 1 in 17,000 people in the UK, according to DEBRA, the only national charity dedicated to the condition. EB sufferers have extremely sensitive skin, which means the slightest trauma or friction can cause blisters and open wounds. In its least severe form, EB affects the hands and feet only; however this can make even walking painful. In more serious cases, patients have wounds all over their bodies, which can lead to infections, scarring and disability.
Dr Patricia Grocott, Reader in Palliative Wound Care, said:
“Patients suffering with more extreme forms of Epidermolysis Bullosa face a daily routine of applying creams, a patchwork of different dressings and then pre-sized tubular bandages to hold their dressings in place. It can take hours and the lack of breathability in the bandages means they can actually do more harm than good, as soggy dressings are an ideal breeding ground for bacteria. And on top of that, patients use thousands of pounds worth of bandages.
“With this Woundcare for Epidermolyis Bullosa ( WEB ) project, we wanted to work with patients and their carers to design a new garment that can be worn over their dressings, but which would allow them more flexibility. The Skinnies WEB™ products, which include leggings, shorts and tops, are durable and can be machine washed, and importantly they are easy to put on and take off. They are also seamless, which is essential for some patients as seams and creases can create new wounds.”
The project involved workshops with patients, their carers and clinicians, in which they described the core problems they face in dressing EB wounds. Working in collaboration with EB nurse specialists who work within the NHS and are also supported by DEBRA, Dr Grocott observed dressing changes to gain further understanding of the challenges patients face.
One patient who worked on the WEB project said:
“The top I am now using is absolutely amazing. It has reduced the amount of time needed to apply and change dressings substantially and I’m sleeping a lot better because there is less pain caused by dressings moving and clothing getting stuck. The skinnies products are so comfortable that I hardly notice I’m wearing them and they don’t interfere with my body temperature.
“Having been rather sceptical about how the garment might help we are all happily amazed at the positive difference it has made to all our lives!”
Elizabeth Pillay, EB Nurse Consultant at Guy’s and St Thomas’ NHS Foundation Trust, in association with DEBRA, said:
“I have been an EB nurse for 17 years, and although there have been many improvements in care during this time, the day-to-day relentless routine for people with EB and their carers continues to be an enormous burden. It has therefore been an enormous pleasure and privilege for the adult EB Nursing team to work on the WEB project which has turned wound care design on its head, by starting with the patient, and having the design fit their needs, rather than the patient struggling to fit the product.”
The project was funded by the Guy’s and St Thomas’ Charity and King’s College London.
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