Launching ‘The Science Behind’ factsheets

23rd April 2026 (Last updated 23rd April 2026)

Dr Abi Witherden stands by a screen displaying project images and text, while an audience, including a woman holding a baby, listens in a conference room.

We are pleased to launch a series of explainer factsheets on the science behind epidermolysis bullosa (EB).

DEBRA UK members who attended the Members Connect event in Newcastle on 29 March got an early preview from our Research Grants Manager, Dr Abi Witherden, but don’t worry if you missed it – we will be highlighting them again at Members’ Weekend in May.

The Science Behind factsheets are available free on our website where you can translate them into different languages using the flag symbol at the top of the page or have them read aloud by clicking the access symbol.

If you prefer to download or print a pdf, there’s the option to do this via a link at the top of the webpage.

A person points to a diagram on a medical information leaflet, surrounded by other scientific documents on a wooden table.

The Science Behind explainers have been developed with EB lived experience and research experts by the DEBRA UK Research Team as an aid to understand some of the more scientific details of EB. DEBRA UK members and employees took part in our involvement exercise, providing comments on the first factsheet and feedback on the layout, language, images and preferences for webpage, pdf file, printouts or QR code.

The positive feedback we received was really supportive:

“This document is brilliant, and particularly helpful for those new to the EB community themselves.”

Wherever possible we made the changes people suggested and kept constructive comments in mind when drafting the next ones in the series:

“Changing some of the text to slightly more bitesize chunks could make it even more inviting”

As always, there were some comments that were harder to act on, with two respondents sharing differing opinions by telling us:

“I’m not keen of the use of the word recipe/recipes” and “I liked the linking to recipes.”

All the comments provided by research experts and our members and staff were read and helped us to do our absolute best to make these factsheets accessible, useful, relevant and appropriate.

We were asked a few specific questions:

“Can it skip generations?”

EB can be inherited in a dominant or recessive fashion but doesn’t really skip generations. The chances of a parent with dominant EB (EBS and DDEB) passing it to their child is 50:50 (like tossing a coin) although their child may have more or less severe symptoms depending on all the other genes they inherit. Symptoms could be mild in one generation and more severe in the next or vary between siblings in the same family. The genes causing recessive EB (RDEB, JEB and KEB) can be carried without causing symptoms and can only appear when both parents are carriers, so there may be no family history of EB at all. There is some more information about EB inheritance in The Science Behind Diagnosing Types of EB.

“What types of inflammation are there and how do they cause problems in EB?”

Inflammation describes the working of the immune system in response to any damage or infection and involves many hundreds of different types of proteins and cells. Inflammation causes itching, pain, swelling, pus, fever and all sorts of activity that we can’t see inside the cells of the body. It can help to kill off bacteria and clear away damaged or infected cells but, if it doesn’t stop when it’s no longer needed, it can cause damage in itself. There is some more information on inflammation in The Science Behind EB Skin.

“Are the kidneys affected?”

Kidneys have the job of filtering unwanted substances out of the blood and into urine. They can be damaged in some types of EB because the inside of the kidney is made from similar cells to the skin (epidermal cells). We haven’t created an explainer about non-skin symptoms of EB… should we?

“Why research is important and the journey we are on.”

This was a suggestion in response to the question of what additional Science Behind… titles we should create and led to the final one in the series (so far), The Science Behind Access to EB Treatments.

Five informational sheets about the science behind EB (Epidermolysis Bullosa) are spread on a wooden table, displaying text, charts, and diagrams.

Our member involvement has been fantastic in helping translate the scientific jargon into clear and kind language. It was also highlighted that, while pdf documents look very pretty, it can be easier to view information on a simple webpage, particularly on a phone screen, so as a result, each explainer is available as a webpage and pdf. They are free to access and written for anyone living with or working with EB who might want to know a bit more about the science behind EB.

In the series: