Posted on Tuesday 21 October 2014
EB patient Henry George meeting Her Royal Highness The Countess of Wessex
As part of International Epidermolysis Bullosa (EB) Awareness Week, our multi-disciplinary EB team are holding an event at St Thomas’ on Wednesday 29 October from 10am-2pm in Central Hall.
EB is a group of inherited fragile skin disorders for which there is no known cure. There are four main types that range in severity, but they all develop blisters in response to even the slightest friction or trauma. Treatment is aimed at minimising pain and reducing the risk of infection.
The event, which is aimed at the patients, public and Trust staff, will feature members of the EB team talking about dressings, diet, well-being, and research.
A dedicated EB hand therapist will demonstrate various aids, including splints and innovative new gloves, developed with Kings College London. Representatives from DEBRA, the charity which supports people with EB, will also be on hand alongside a patient representative.
St Thomas’ is one of just two centres of excellence in the UK that support adults with this rare and often devastating condition. It is renowned internationally for its research and care of people with EB. The hospital’s expertise in related specialities such as dentistry, pain management, ophthalmology, gastroenterology and orthopaedics, all of which frequently treat patients with EB, is key to this reputation.
Jane Clapham, Lead EB Nurse Specialist, says: “We want to raise awareness of EB, not just with the public but with Trust staff whose knowledge may be limited but may be required to care for people with the condition. We want to show that, despite people with EB often being disabled by it, they can have a full and great life.”
The photo accompanying this story shows EB patient Henry George meeting Her Royal Highness The Countess of Wessex, who is patron of the charity DEBRA, during her visit to St Thomas’ earlier this year.
Henry said: “I am extremely grateful to the specialist nurses and the rest of the EB team for enabling me to live as normal a life as possible. Because of their expertise, they are helping me to achieve my goals, get on with life and look positively to the future.”