Epidermolysis Bullosa (EB) is the name used to describe a group of rare inherited skin fragility disorders. This means that the skin is very weak or fragile and tears at the slightest scratch or trauma. EB usually presents at, or soon after, birth and children and young people with EB may develop blisters and ulcers on the skin and often inside the mouth (mucous membranes).
The severity of the condition varies widely between the different types of EB, ranging from occasional blistering of the hands and feet to severe blisters over the whole body. We have produced a booklet describing children’s experience of EB: EB - my story[pdf] 2MB.
Our Epidermolysis Bullosa service
Our Children’s Hospital is one of four centres that have been nationally commissioned to provide treatment for EB.
Our service is delivered by a multidisciplinary team who are experts in the diagnosis and assessment of infants and young people and who to make our young patients’ symptoms manageable and to provide patients and families with long-term support.
Newborn babies who are suspected of having EB are visited and assessed by our experts in their local hospital. Often a skin biopsy and blood tests are taken to confirm the diagnosis. Thereafter, children and young people are assessed in a multidisciplinary outpatient clinic at our Children’s hospital every 3-12 months. During these visits, children are seen by many of our specialist teams including:
- Consultant dermatologists
- EB clinical nurse specialists
- Interventional radiologists from our X-ray department
- Occupational therapists
- Plastic/hand surgeons.
Between these clinics at the hospital, children and young people will also have regular visits from our specialist EB nurses to their home and school. Where required, our EB team also delivers day case reviews and inpatient admissions.
We also work closely with the national EB laboratory based at Guys and St Thomas' Hospital in London. Genetic counselling is also available from the genetics team at our Women's hospital in conjunction with local teams.
Internet resources for patients and families
- EB information booklet
- Patient support groups – DEBRA
- For more information on NHS EB services please visit NHS Choices
- BBC film about an inspiring young woman with EB