DEBRA UK

Mental health support for people with EB can't wait. Will you help ensure that no one faces the relentless challenges of EB alone? 💙 Right now, people with EB are struggling without the mental health support they desperately need. 55% say that this cruel condition impacts their emotional wellbeing, and many cope in silence. EB isn't just physical pain, it's mental pain too. Sarah lives with epidermolysis bullosa simplex (EBS), the most common type of EB: "My EB might not always be visible, but the physical and emotional toll is all too real. I'm not alone in this; my dad, brother and uncle all have EBS. It's very debilitating, and it affects every part of your everyday life without realising it." This Christmas, Sarah and her father Tony, share more about living with EBS and the effects it has on them not just physically, but mentally: the 'unseen scars' of EB. A story all too familiar to others living with the condition. Your donation could fund counselling sessions, or EB community events for people to connect and share experiences. It could also help provide grants for specialist items to alleviate physical pain. Please donate today: bit.ly/3Ohivyu

🔬 Research blog: DEBRA UK partners with NHS England 🔬 Meet Marta Kwiatkowska, a Senior Data Analyst on the DEBRA UK-NHS England Partnership. Marta is working on a project to study the information in NHS records to find out more about the facts and figures of EB. This will help us to answer research questions important to people living with EB. "My work with NHS records is essential to better understand how the NHS provides healthcare to people living with EB. My results will help to raise awareness of EB by providing clear facts and figures to doctors, patients, and the public, that can be used to improve patient care. It will allow us to understand the frequency, nature, causes and outcomes of the different types of inherited EB. Having this knowledge supports researchers working on the causes, prevention, diagnosis, treatment and management of EB symptoms." Read Marta's blog! 👇

🌟 Thank you Jaysam Contractors Ltd! 🌟   We’re so grateful to have been chosen as Jaysam’s Charity of the Year 2024. Last week they held a charity night which raised an incredible £15,000 for families living with epidermolysis bullosa (EB).   As the year draws to a close, we wanted to take this opportunity to thank all the companies that have helped us to support the EB community this year. Your commitment makes a real difference to those living with EB, thank you💙

“The most frustrating thing about EB is the pain. There's nothing you can do to get away from it. It's hard to make others understand what it's really like. Growing up, I was often the first person with EB that doctors and nurses had seen. It was a very lonely experience. DEBRA’s always been there for me, providing a support network whenever it's needed.” – Heather lives with EBS. 55% of those with EB state it has a high or moderate impact on their mental health, and 50% have experienced bullying or abuse.* Your donation could fund counselling sessions, or EB community events for people to connect and share experiences. It could also help provide grants for specialist items to alleviate physical pain. Please donate today to ensure no one facing EB is left without the mental health support they need: bit.ly/3Ohivyu *according to the 2023 EB Insights Study

🔬 Research blog: EB's impact on family planning decisions 🔬 Genetic counsellor student Mia Keating from Cardiff University / Prifysgol Caerdydd is exploring the wider families’ thoughts and decisions regarding family planning, and how having a family member with EB affect views on family planning. "My aim is to understand EB and the experiences of affected families. By engaging with relatives, I hope to identify gaps in family planning support and inform DEBRA UK on how to help. My goal is to raise EB awareness and advocate for those impacted through my future clinical work." As part of her research, Mia is looking for aunts, uncles and cousins of people living with EB, to take part in an online interview. Please get in touch with Mia by emailing keatingme@cardiff.ac.uk if you'd like to get involved. Read Mia's blog to find out more about her project! 👉 bit.ly/41pdxYi

🔬 Research blog: EB prescriptions in photos 🔬 Meet Catherine Silk, a Genetic Counselling MSc student at Cardiff University / Prifysgol Caerdydd, researching the impact of the medications taken for any type of EB on the daily lives of people living with the condition. Catherine is looking for adults living with any type of EB to share photographs that represent how medications taken to manage EB symptoms affect their daily life. To get involved, please contact Catherine by emailing silkC3@cardiff.ac.uk. Read Catherine's blog to find out more about her project! 👉 bit.ly/3BuVNQK

Yesterday, our Director of Research, Dr Sagair Hussain, PhD and Co-Vice Chair of the Board, Carly Fields represented DEBRA UK at the NHS Genomics Healthcare Summit. 🧬 This was an opportunity to hear about how the NHS is leading in the latest advancements in genomics healthcare, and to raise awareness of EB with NHS leaders, policymakers, and other stakeholders in the genomics field. “The work being done in the UK on genomics is world-class. On behalf of DEBRA UK and our members, we attended this summit to learn best practice on genomics and to engage with the best minds in this important area." – Carly Fields #NHSGenomics2024

"A diagnosis has empowered me because it's a thing I can then say: I have this condition and that means I can't do the things that you can do. When you say to people I have these blisters, I have these sore feet, it doesn't sound like anything, does it? A diagnosis has meant I feel like I have permission to treat myself better because I can say, I can't do that because of my EB. You might not be able to see it, but it's something that is a real struggle." Through DEBRA UK, Sarah has connected with others who have EB and she's been officially diagnosed with the condition, which has been both empowering and life-changing. Before she constantly thought, 'what's wrong with me?', and felt inadequate. But now she can say, 'I have EB' and has accepted that she cannot do certain things and to be kinder to herself. Your donation could help fund EB community events for people like Sarah to connect and share experiences of living with a rare condition like EB. Please donate today: bit.ly/3Ohivyu

🔬 Research blog: EB’s impact on education🔬 Genetic and genomics counselling MSc student, Helen Shepperson, is conducting research to explore how living with any type of EB affects a person’s experiences of education – whether that is in school, college, or university. "The school years are such an important part of our lives – not just for the learning opportunities, but for building relationships, developing our identity, and imagining our future. I am interested to hear what it’s like to balance all of the above whilst also managing a significant health condition like EB." As part of her research, Helen is looking for 16-25 years old, or parents/carers of a school-age person with EB, to take part in one online interview. Please get in touch with Helen by emailing sheppersonHC@cardiff.ac.uk if you'd like to get involved. Read Helen's blog to find out more about her project! 👉 bit.ly/3D6ZH2x

🕸️ “My spidey senses are tingling!” 🕸️ What a day at The Brothers Trust’s exclusive screening of Spider-Man: No Way Home! 🎥 🌟 A huge thank you to Tom Holland and The Brothers Trust for inviting 22 of our members to share in this unforgettable experience. Not only was this an incredible opportunity for our members to meet Tom and have their questions answered in a Q&A session, it was also a chance for them to connect and share experiences with others living with EB. We are so grateful to The Brother’s Trust for organising this event and for everything they do to help raise awareness and funds for families living with EB 💙 🦋