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Developments in epidermolysis bullosa from across Ireland

By Update Journal - 13th May 2025


Reference: May 2025 | Issue 5 | Vol 11 | Page 28


Maynooth University leads study investigating ‘spray-on, wash-off’ bandages for painful EB

Investigators at Maynooth University (MU) are leading research into whether ‘spray on, wash off’ bandages will be a viable alternative to those currently used for patients with the genetic skin condition epidermolysis bullosa (EB). Dressings and bandages often cause severe pain when applied and removed for these patients. The work will be carried out by Dr Hilal Kirpik, Department of Chemistry, MU, who is passionate about the real world impact of chemical research.

Debra Research Officer Grace Callan, MU Postdoctoral Researcher Dr Hilal Kirpik, MU’s Science and Engineering Associate Dean of Research Dr Robert Elmes and Head of Research at Debra, Sinead Hickey

Around 300 people in Ireland suffer from the incurable disease, which is caused by the absence of essential proteins between the skin layers, and results in extremely fragile skin that blisters at the mildest touch. Simplex, junctional, kindler, and dystrophic EB are the main subtypes of the disorder, with dystrophic being the most severe form. The specific type of EB is determined by the affected gene.

In the most debilitating cases, such as recessive dystrophic EB, bandage changes to protect wounds and prevent blister infection are required every day. For many patients, this process of bandage changes can last three to four hours at a time and cause agonising pain. Pricing for the spray-on bandages is not expected to be out of reach of those living with EB as the materials used are widely available and completely harmless to the skin.

“Bandage changes are a particularly excruciating element of this condition and research of this nature has the potential to make a real difference for people living with EB,” said Jimmy Fearon, CEO of Debra, the national charity supporting those living with EB. “We hope its outcome might contribute to improved quality of life for those living with EB in Ireland, and beyond.”

The two-year study received co-funding of almost €113,000 from Debra and the Irish Research Council. Its key aim will be to develop a prototype, with the ambition of allowing non-abrasive bandages to be sprayed onto the skin. Then, by placing them under cold water, it is anticipated by the research team that they will melt away and be removed painlessly. If successful, the ‘spray-on, wash-off’ approach would notably improve quality of life and reduce pain during dressing changes for patients with EB.

“The aim, ultimately, is not to cause further damage to the skin,” said project supervisor Dr Robert Elmes, Associate Professor at the Department of Chemistry and a funded investigator at the Science Foundation Ireland Research Centre for Pharmaceuticals (SSPC).

“We use supramolecular chemistry as the basis to the research, studying how molecules interact with each other and how we can predict how they will separate from each other as they cool. This is an excellent example of a fundamental area of chemical science having a potentially life-changing impact on the everyday lives of people with EB. By the end of the project, we hope to have a prototype that people can take home and administer themselves without the need for painful bandage removal.”

Major RCSI research aims to develop ‘scaffold’ to heal chronic EB wounds

An Irish research project is aiming to revolutionise cell repair and inhibit infection in people living with the painful skin condition epidermolysis bullosa (EB). Prof Fergal O’Brien and his team at the Royal College of Surgeons in Ireland (RCSI) University of Medicine and Health Sciences are developing a gene-activated ‘scaffold’ to heal chronic wounds associated with EB. The external scaffold layer will feature antimicrobial properties, while the inside will contain collagen 7 – the affected gene in those who live with dystrophic EB.

Professor Fergal O’Brien

“The aim is to make an off-the-shelf product that would be very simple to apply,” said research team member Dr Marko Dobricic. “I’m going to focus on recessive dystrophic EB, and then, once it potentially works for one case, we can try to translate the same mechanisms to other forms of EB. We hope to be able to tailor the size and shape of the bandage or scaffold to the skin that needs to be treated.”

Prof O’Brien contacted Debra, the national charity supporting those living with EB, after watching a Late Late Show interview with former Ireland rugby legend and Debra ambassador Johnny Sexton and EB sufferer Claudia Scanlon. The 21-year-old Dubliner lives with dystrophic EB, a severe subtype that requires excruciating bandage changes to protect wounds and prevent blister infection. Debra gave seed funding to the research in 2022, which has resulted in promising pilot data and further support from the Health Research Board.

“The uniqueness of what we’re trying to achieve is using bio-active, bio-mimetic materials – mimicking the tissues of the body – to deliver therapeutics,” said Prof O’Brien, Deputy Vice-Chancellor for Research and Innovation at RCSI.

“We’re taking concepts used to treat things like burns, for example, and are now targeting EB. The scaffold would be applied to the wound and slowly be absorbed into the tissue over time. It will depend on each individual situation and the complexity of the wound, but we expect this would be managed alongside bandage changes. We’re trying to trick the cells into correcting defunct genes with gene therapeutics.

“That’s what gene therapy is – you’re trying to get cells to under- express or over-express certain proteins, where there’s a problem. The implant will absorb and break back down into the body without any side effects. It provides an opportunity to alleviate pain and suffering, which is a horrific part of this condition.”

New information cards to protect EB skin

Debra has developed novel information cards to protect the 300 people living with epidermolysis bullosa (EB) in Ireland. The aim of the initiative is to encourage emergency services like paramedics and clinical staff in general practice, hospitals, and other healthcare settings, to be extremely careful with the skin of EB patients, and to inform them about the condition.

“Each card contains information to help medical staff who may have limited knowledge of EB, along with contact details for EB services,” said Deirdre Callis, Head of Family Support at Debra. “The cards, which are free, are designed to help medical professionals to take the right action during emergencies, and to help people living with EB to explain their condition more easily.”

The idea for the licence-style information card came from Debra’s EB Expert Panel, which raised concerns about how frustrating communicating EB to others can be for those living with it. Seamus Graham, from Knocknacarra in Galway, but originally from Killeevan in Monaghan, said explaining his EB to healthcare professionals is often an “exhausting process”.

“I have cardiomyopathy related to EB, and when I’ve had ECG (electrocardiogram) tests before, I’ve had to ask people not to use ECG stickers on my skin or at least to let me take them off myself, but it has not happened,” he said.

“I hope with the card, whoever admits me to hospital can say to everyone involved in my care that I have EB and what that means. I also feel that in the next 10 years or so, we will reach the point where more people know what EB involves. But until then, I’m very happy to have this card in my wallet.”

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Credit:iStock.com/miriam-doerr

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