Walking with EBS (2022)

Continually blistered feet can make walking incredibly painful. This research is investigating how this impacts on the way people with EBS walk and how customised footwear could change the way a person walks, helping with balance and, over time, preventing damage to joints throughout their body.

Professors Deborah Falla and Adrian Heagerty are working at Solihull Hospital and the University of Birmingham, UK, to understand how walking on sore feet affects the joints throughout the body. Blisters and thickened skin on the feet of people with epidermolysis bullosa simplex (EBS) can make it hard to walk and cause additional problems with the ankles, knees, hips and spine. Specific exercises and custom-made shoes or insoles may be developed along with guidelines to help people with EB walk more comfortably throughout their lives.

About our funding:

Research leader	Prof Deborah Falla, BPhty (Hons), PhD and Prof Adrian Heagerty, BSc (Hons), MBBS, MRCP, MD, FRCP
Institution	Adult EB Team, Solihull Hospital Centre of Precision Rehabilitation for Spinal Pain, School of Sport, Exercise and Rehabilitation Sciences, College of Life and Environmental Sciences, University of Birmingham
Type of EB	EB simplex (EBS)
Patient involvement	21 people with EB and matched controls
Funding amount	£46,030.30
Project length	1 year (extended due to Covid)
Start date	September 2021
DEBRA internal ID	Heagerty_Falla1

Final progress summary:

This study was completed in 2022 and confirmed that people with EBS push off the ground less strongly with their feet when walking than people without painful blisters. The researchers would like to continue their work to test the effects of balance exercises and special footwear or insoles (orthotics) to help spread pressure across the sole of the foot and make walking more comfortable.

Results were published in the British Journal of Dermatology and the Journal of Investigative Dermatology and presented as a poster to the Society for Investigative Dermatology.

Latest progress summary:

The pilot study of 21 adults with EBS has been completed. For each person, the pressure under their feet while walking was compared to someone without EB but of a similar age and sex. The results showed that people with EB walked differently, putting less pressure on their feet when placing their heel or pushing off the ground. People with EB who had blisters on their feet pushed off the ground with even less pressure than those who didn’t currently have blisters. The researchers suggest that this style of walking may help to reduce blistering and pain but may make it harder to balance when walking over uneven ground. Walking differently because of the pain of EBS may affect muscle strength and increase the risk of joint pain and damage. The researchers are now developing strategies to try to help people with EBS avoid walking differently that will help them to keep their balance on uneven ground and protect their joints and muscles.
The results were presented to the Society for Investigative Dermatology and British Association of Dermatologists annual meeting in 2022 and to DEBRA members at our Members' Weekend in May 2022 by Dr Devecchi:

About our researchers:

Deborah Falla, BPhty (Hons), PhD

Professor Deborah Falla

Professor Deborah Falla is Chair in Rehabilitation Science and Physiotherapy at the University of Birmingham, UK and is the Director of the Centre of Precision Rehabilitation for Spinal Pain (CPR Spine). Her research utilises state of the art electrophysiological and biomechanical measures to evaluate human movement and how it is affected or adapted in response to various states (e.g. injury, fatigue, pathology, training and pain). Her research interests also include optimisation of the management of musculoskeletal pain disorders with a particular interest in spinal pain. She has published over 190 papers in international, peer-reviewed journals, more than 300 conference papers/abstracts including over 35 invited/keynote lectures and has received several recognitions and awards for her work including the German Pain Research Prize in 2014, the George J. Davies - James A. Gould Excellence in Clinical Inquiry Award in 2009 and the Delsys Prize for Electromyography Innovation in 2004. Professor Falla is an author/editor of three books including the latest entitled “Management of neck pain disorders: a research informed approach” (Elsevier). Professor Falla acts as an Associate Editor for Musculoskeletal Science & Practice, the Journal of Electromyography and Kinesiology and IEEE Transactions on Neural Systems and Rehabilitation Engineering. She was President of the International Society of Electrophysiology and Kinesiology (ISEK) from 2016 to 2018.

Professor Adrian H M Heagerty BSc (Hons), MBBS, MRCP, MD, FRCP

Professor Adrian H M Heagerty BSc (Hons), MBBS, MRCP, MD, FRCP

Appointed as a Consultant Dermatologist at the Birmingham Skin Hospital in 1995, the opportunity arose in 1998 to start a new department of dermatology at Solihull Hospital, part of Birmingham Heartlands Hospital and is now the Heart of England Foundation Trust. Professor Heagerty has links with the research community in Epidermolysis Bullosa and Pachyonychia Congenita. In his work as senior registrar, he was able to identify families with EB simplex, (EBS) which resulted in the determination of the underlying abnormality in EBS. Combined with work in Junctional and Dystrophic forms of EB, and latterly as lead for the NHS England half national adult service for such patients, Professor Heagerty was able to work closely with Prof WHI McLean, in the University of Dundee, exploring new technologies to inhibit gene expression, using the EB model as a paradigm. Professor Heagerty was appointed as Honorary Professor of Dermatology at The University of Birmingham, with sessions in the Institute of Inflammation and Ageing, working with Professor Chris Buckley, Kennedy Professor of Rheumatology, to explore the initiation of Psoriasis and Psoriatic Arthropathy, and with Professor Janet Lord and her colleagues examining the inflammatory responses and scarring in Dystrophic Epidermolysis Bullosa.

Why this research is important:

Walking with sore feet or thickened areas of skin of the feet will always result in the feet not being placed properly on the ground, nor indeed, will the push off and landing of the feet be positioned in the normal way while walking. In epidermolysis bullosa simplex (EBS), with recurrent blistering and thickening of the skin there is tendency to walk on the sides of the feet to try to avoid sore areas. This will then lead to an abnormal positioning of the ankles, knees and hips which will not be the same on the left and right. When people walk in this way, therefore, their hips move up and down causing the spine to “snake” and putting unnecessary stress on all the joints from the back downwards.

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Researcher's abstract:

Grant Title: Gait analysis in EB simplex

The researchers are running a pilot study of 20 patients with EBS to analyse the way in which they walk using a computerised room which can plot the positions of the joints, as well as the pressures exerted through the feet during walking in a gait laboratory. This has been arranged with the University of Birmingham in the Department of Rehabilitation and Physiotherapy, where the effects of such feet issues can be measured. Podiatrists from Solihull will also be looking at irregularities in the feet and pressures associated with walking to enable the researchers to develop custom built shoes and insoles to try to correct the unevenness of walking and see whether this improves the abnormalities of movement in the joints.
The team is aiming to optimize support for feet to help correct the posture and walking as much as possible. The researchers have found that there is also some muscle memory from having had problems over many years which will then need to be treated by exercising under the care of Professor Falla, a Professor of Rehabilitation at Birmingham University.
It is hoped that this research will lead to development of a clinical protocol for gait analysis in EB, leading towards a clinical practice guideline and improved treatment and care for patients with EB that will allow them to maintain mobility throughout their lives.

Researcher’s progress update:

EBS results in blistering of the feet and thickened skin on the soles of the feet (keratoderma) that can make it very painful to walk. It also has a huge impact on what activities people with EBS can carry out day to day. We have observed in clinic that this also resulted in joint pain.

Because of this the EB research group at Solihull Hospital and the University of Birmingham, led by Prof. Adrian Heagerty, have been researching the impact that Epidermolysis Bullosa Simplex has on the way that those affect by EBS walk. We are the first group to research this area of EB.

Through this research we have found that people with EBS exert less pressure underneath their feet compared to people without EBS whilst walking. We think that people with EBS learnt to walk this way in order to reduce stress on the soles of the feet which then in turn may reduce blistering. The problem with walking this way is that it can affect stability whilst walking and in the long term have adverse effects on other joints, muscle strength and increases falls risk.

We are using the results of this research to develop preventative and rehabilitation strategies which we hope in the future will improve people with EBS’ quality of life and correct / prevent the long term effects, such as joint pain. (from June 2022 Progress Report)

Researcher's final progress update:

Our study examined the way people with epidermolysis bullosa simplex (EBS) walk compared to people without EBS. Specifically, we examined the forces applied by the feet on the ground during walking. We expected to see differences in the way people with EBS walk since they commonly have painful blisters on their feet. The results of the study confirmed that people with EBS walk with lower forces applied to the ground by their feet. The different way that people with EBS walk might affect their ability to balance, especially when walking on irregular surfaces.

In this study we also found that there was a large variation between different people with EBS. Some of this variation could be explained by the presence of blisters. For example, patients with blisters at the time of testing showed the lowest forces from their feet to the ground during the push phase of walking compared with patients without blisters. These results are important as they show that different treatments could help to improve the quality of walking and balance in patients with EBS.

We would like to continue this work to test the effects of balance exercises and special orthotics to help spread the pressure across the foot in people with EBS as we believe that this will help to improve the quality of their walking. (From 2022 Final Progress Report.)