Coronavirus: Adult epidermolysis bullosa (EB) service update
Due to increased demand on the hospital due to the COVID-19 pandemic, we are having to make significant changes to our services which may require cancellation of appointments.
Patients with milder forms of epidermolysis bullosa are not thought to be at greater risk of developing coronavirus compared with the general population.
Patients with more severe forms of EB, such as recessive dystrophic EB, severe generalised, should be encouraged to shield.
Please see current national guidance on gov.uk website and NHS website.
We are attempting to contact all patients with a future scheduled appointment. In some cases we are changing appointments to a telephone consultation, and in certain circumstances, a video appointment. Some appointments may be cancelled without a future date being arranged at this stage. If we cancel your appointment you will remain on our waiting list and we will contact you in due course.
If you have not heard from us within 3 days of your scheduled appointment please contact us by email: Annette.Burnett1@gstt.nhs.uk
If you are unable to use email or your query is urgent, please call the following number 02071880843. Our phone lines are very busy and there may be a wait for your call to be answered.
If you are an existing patient who has previously been seen in our service and need advice from the clinical team please see below for the appropriate option:
For urgent clinical advice:
Other resources you may find helpful:
Please see a list of frequently asked questions (FAQ’s). If your query is not covered in the FAQs please either email or call us as detailed above.
We are doing everything we can to support GPs and your patients during the Covid-19 pandemic. If you need advice from our clinical team please contact: firstname.lastname@example.org.
Please see a list of the FAQ’s we are receiving for our patients.
Epidermolysis bullosa (EB) is a rare inherited skin disorder which causes the skin of affected people to be excessively fragile and blister at the slightest knock or rub. There are a number of different types of EB with differing severities and variable systemic problems. Although milder types can cause limited blistering on the hands and feet, others can affect larger areas of the skin, resulting in chronic wounds, significant scarring and internal complications. For more information about EB, visit the debra charity website.
We are one of two national centres for the diagnosis and clinical care of adults with EB. St Thomas' is a leading centre for translational and clinical research in EB.
The national EB diagnostic laboratory is based within our department. Here we undertake analysis of skin biopsy specimens, genetic testing for EB and prenatal diagnosis of severe forms of EB.
Our team works closely with colleagues from dermatology, plastic surgery, specialist nursing, dentistry, interventional radiology, cancer services, dietetics, the eye department, physiotherapy, occupational therapy, psychotherapy and foot health.
We also work closely with the genetic skin disease group at King's College London.