Today (Friday, 5th May), Joel James, MS for South Wales Central, had the honour of hosting a meeting with the President of DEBRA UK, Simon Weston CBE, and CEO – Tony Byrne in the Senedd to discover how the charity supports those with butterfly skin condition.
DEBRA is a UK national charity that supports and tirelessly campaigns for those that suffer from Epidermolysis Bullosa (EB), more commonly known as butterfly skin condition due to the skin being as fragile as a butterfly wing. EB is a painful genetic condition that causes the skin to become exceptionally delicate and tear or blister at the slightest touch.
Joel, Simon, and Tony engaged in a constructive meeting where Joel learnt more about how the condition impacts the lives of those living with EB and DEBRA’s attempts to find a cure. Joel learnt how DEBRA is seeking funding of £10 million to pay for drug research trials to prove the efficacy of specific anti-inflammatory drugs on the treatment of EB. Joel also expressed his desire for specialist centres in Wales to make treatment, research, and support more accessible to Welsh patients.
During discussions, Simon Weston CBE explained how DEBRA and those with EB held great relevancy to him due to spending a substantial portion of his life having dressings changed and dealing with incomprehensible itching. Whilst the causes may differ, the emotions are the same for the Falklands War veteran.
Following the meeting, Joel said:
“It was an absolute pleasure to welcome Simon Weston CBE and Tony Byrne to the Senedd and I want to thank them for agreeing to meet with me.
Few people are aware of EB and understand the impact the condition has on people’s lives. I was keen to meet DEBRA as they are incredibly active and provide immense support to patients. My main objective was to try and establish ways in which care, support and treatments can be improved in Wales.
Butterfly skin condition can be extremely debilitating and severely impact the self-confidence of those living with the condition. We must do more to eradicate the stigma attached to skin conditions and invest more into finding a cure.”
DEBRA UK was founded in 1978 by Phyllis Hilton, whose daughter, Debra, had Epidermolysis Bullosa and was the world’s first patient support group for those living with EB. Since then, the charity has grown to have over 3,000 members and currently supports over 5,000 people in the UK.
If you would like to know more about DEBRA, please visit their website.
