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Charity names Simon Weston as president

DEBRA, the charity which supports people suffering from the skin condition Epidermolysis Bullosa (EB), has appointed South Wales Falklands War veteran Simon Weston as its new president, and announced it is funding a clinical trial to investigate the use of cannabinoid medicines to treat pain and itch in adults with  EB.

EB is a potentially fatal skin condition which affects over 5,000 people in the UK. The biggest challenge for suffers of EB is living with the pain and itching caused by the condition.

DEBRA is launching a clinical trial to investigate the therapeutic potential for cannabinoid-based medicine (CBM) in treating pain and itch in EB. The CBM being used contains compounds extracted from the cannabis plant.

EB is a genetic condition which causes the skin to blister and tear at the slightest touch. Blisters need to be drained and dressed every day – a painful procedure that can take several hours.  In some cases, internal linings and organs are affected, and complications as a result of infection and extensive scarring are common. Some types of EB can be fatal in infancy and others are severely life-limiting.

The three-year trial is taking place at the Center for Blistering Diseases, University Medical Center Groningen, in the Netherlands.

The current treatment for the relief of pain and itch caused by EB, is the prolonged used of opiates and anti-inflammatories, which are known to lead to unwanted side effects.

Caroline Collins, director of research at DEBRA, said: “We are extremely pleased to fund this clinical trial, particularly in light of the government’s decision to legalise some forms of medical cannabis.”

The charity is celebrating its 40th anniversary today (Tuesday 27 November) and Simon Weston’s appointment is part of the celebrations along with the funding announcement.

Simon is a British Army veteran who suffered burns on 45% of his body when he was injured during the Falklands War and had to undergo 98 operations.

DEBRA was founded in 1978 by Phyllis Hilton whose daughter Debra had EB.

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