A new national laboratory to diagnose the rare inherited skin disorder Epidermolysis Bullosa was earlier this month officially opened at St Thomas’ Hospital by model Nell McAndrew.
Professor John McGrath, Professor Robin Eady, Trish Dopping-Hepenstal, Nell McAndrew and John Dart officially opening the lab
EB is a group of disorders that cause severe blistering of the skin – it is caused by mutations in genes that make the proteins which hold the outer layer of the skin, the epidermis, onto the inner layer of skin, the dermis.
There are at least 10 genes involved in EB and the severity of the condition ranges from relatively mild blistering to severe blistering and skin loss which can result in early death from sepsis or other complications.
Approximately 5,000 people are living with EB in the UK and the condition affects 1 in every 17,000 children born in this country.
EB hit the headlines earlier this year when the Channel 4 documentary â€˜The Boy Whose Skin Fell Off' documented the life and death of EB sufferer Jonny Kennedy – the programme is due to be repeated later this month to raise further awareness of the condition.
Nell McAndrew says: "The courage of Jonny and many other people like him who are living with EB is an inspiration. I am delighted to support not only the great work that DebRA does but also this new lab which will enable the experts at St Thomas" to help diagnose the condition."
The Department of Health's National Specialist Commissioning Advisory Group (NSCAG) has designated St Thomas' as the national lab to provide rapid diagnosis of all suspected cases of EB throughout the country.
NSCAG has provided funding worth £240,000 to buy equipment for the new lab while a grant of £85,000 has been provided by Guy's and St Thomas' Charitable Foundation for refurbishment of the lab space.
Consultant Dermatologist Professor John McGrath, who leads the EB service at St Thomas', says: "I hope that this new lab will improve the care provided for people living with EB throughout the UK by accurately diagnosing the condition as quickly as possible. I am delighted that new funding from the Department of Health has made this new lab a reality."
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