Funding agreed for people with ‘butterfly skin’ disorder after long campaign

Ring-fenced funding to help people living with the incurable skin condition epidermolysis bullosa (EB) is a “major step forward”, according to the national charity representing those affected.
Jimmy Fearon, chief executive of Debra, the national charity, said he was given an official commitment by Minister for Health Stephen Donnelly that the HSE will receive annual funding for EB, at a meeting in Government Buildings on Wednesday.
This funding will help the 300 people living with the condition, which results in easy blistering of the skin and mucous membranes, and is often called “Butterfly Skin”.
“It has been a long road but at last, we have a firm promise from the Government that this funding will be in place for those living with EB in Ireland, and their families,” said Mr Fearon.
“This has been achieved through years of tireless advocacy and marks a key milestone in meeting the needs of those with EB and improving their quality of life. The emotional and physical toll on them is huge and many carers feel overwhelmed, isolated and out of their depth.”
The funding will be used to build “integrated and sustainable” nursing care, as well as additional psychological support at St James’s Hospital to support the mental wellbeing of EB patients, whose quality of life is affected by constant pain, and a bandage supply scheme.
Actor Colin Farrell has helped to raise awareness about the condition, running the Dublin Marathon last month to raise funds for Debra. His campaign, which was to support his friend Emma Fogarty, who has the most severe form of the condition has raised over €857,000.