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Unique Rare Diseases Centre accepts first EB patient

Unique Rare Diseases Centre accepts first EB patient

Earlier this month the new Rare Diseases Centre at St Thomas’ Hospital, London, accepted its first patient suffering from Epidermolysis Bullosa (EB) – a potentially fatal skin condition that causes constant pain due to unstoppable internal and external blistering.

The new Centre brings together all the services, healthcare professionals and facilities necessary to meet the complex medical requirements of adults suffering from EB in one place, transforming EB patient care.

The construction of the state-of-the-art facility was made possible thanks to generous funding from a number of charities, including DEBRA – the national charity supporting those directly affected by, and working with, EB – which contributed £250,000 to the project.

People suffering from EB often need to see many different specialists to get the care they need. EB affects the whole body. The condition can cause disfigurement, internal tissue damage, malnutrition and an aggressive form of skin cancer. Psychological challenges are inevitable.

Previously, when visiting the specialist EB clinic, patients had to go to different areas around the hospital site to see the various specialists involved in their care, a time-consuming and stressful situation that often exacerbated blistering and put many patients off accessing care.

Prof Jemma Mellerio, Consultant Dermatologist at Guy’s and St Thomas’ NHS Foundation Trust said: ‘Life with EB can mean clinic appointments are all too frequent. The new centre means we can deliver the best possible care for adults suffering from EB, and make it easier for patients to access the healthcare services they need, improving the quality of life for thousands of people suffering from EB.’

James Dunn, 24, from Liverpool, has EB and was one of the first patients to be seen at the Rare Diseases Centre. He said: ‘The centre is very bright, modern and spacious. I love the communal area – it’s more open and sociable now. It’s brilliant that, for the first time, we have our own space and everything we need is done here without moving around – it makes life much easier.’

Ben Merrett, DEBRA CEO, said: 'We’re proud to work in partnership with the NHS to deliver an enhanced healthcare service for people suffering from EB. As Guy’s and St Thomas’ NHS Foundation Trust is a Centre of Excellence in EB, providing a gold standard of care, including a specialist team of EB nurses (partly funded by DEBRA), dietitians, podiatrists, physiotherapists and psychologists, it seems only fitting that they have facilities to match. It’s thanks to the generosity of our supporters that we were able to contribute significantly to this project which will make such a difference to people suffering from EB, not only for the first patient to be accepted here, but for thousands of people suffering from EB for years to come.’

The official opening of the new Rare Diseases Centre will take place on 28 February 2018, Rare Disease Day. The opening will form the final part of DEBRA’s #FightEB campaign which is aimed at raising EB awareness and as much money as possible to fund research into effective treatments and enable DEBRA to provide care and support to everyone suffering from EB.

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