Our DEBRA President Simon Weston CBE.

Simon Weston CBE

In the honorary role of DEBRA's President, Simon Weston CBE, will raise awareness of EB and DEBRA as well as supporting fundraising to provide care and support for the EB Community and fund research into effective treatments and a cure.

Whilst serving as a Welsh Guardsman during the Falklands conflict, Simon suffered 46% burns to his body when he was injured in an explosion aboard HMS Sir Galahad. Since his injury 36 years ago, Simon has continuous treatment to manage his condition and has undergone 98 operations, including surgery to create new eyelids earlier this year.

“I feel very relevant to DEBRA, having spent so much time having dressings changed, having healing skin pulled off because that’s what dressings do, having itch beyond all comprehension. I understand something of the pain and suffering that people with EB endure every day. I want to do what I can to fight EB and raise the profile of the condition. I hope by doing this we can increase understanding of the condition with the general public and improve the quality of life for people suffering from the condition here and now.”

Simon’s own experience of the long-term use of opiates like morphine to manage pain means he has a unique insight into the side effects can cause and welcomes research into more effective forms of pain relief, including the research we’re funding into the use of cannabinoid-based medicines to treat pain and itch in EB.

Read more about the trial here.