Charity calls for €1m a year investment for patients with 'butterfly disease'

Emma Forgarty, Debra Ireland patient representative, speaking at the launch of the charity's pre-Budget submission. Picture: Robbie Reynolds.

The Government must invest €1m per year to meet the needs of patients with a rare skin disease, says a charity advocating for sufferers of the agonising condition.

In its pre-budget submission to TDs on Thursday morning, Debra Ireland called for a Government investment of €941,000 annually in home care, outreach care and mental health supports for sufferers of severe epidermolysis bullosa (EB).

EB is a genetic skin condition sometimes known as the “butterfly disease”. There are seven people in Ireland with a severe form of EB who need access to a home nursing care package that can deliver bandage changes at home, the charity said.

Joanna Joyce, Debra Ireland’s advocacy manager, said:

The skin of people with EB blisters at the slightest touch, and some require extensive and extremely painful bandage changes which can last hours.

“This type of care is highly complex because EB causes multiple wounds on various areas of the body, which are at different stages of healing.” 

The charity called for €786,000 to be ring-fenced in the upcoming budget for home nursing care, €75,000 for an EB outreach nurse and €80,000 for a clinical psychologist dedicated to supporting adults with the condition.

Patient representatives Claudia Scanlon, left, and Emma Forgarty outside Leinster House ahead of the launch of Debra Ireland's pre-budget submission on Thursday, alongside Colm Darling, Chairman, Debra Ireland, Liz Collins, mother of Claudia and Jimmy Fearon, CEO, Debra Ireland. Picture: Robbie Reynolds.

The required investment would recognise the unique and specific needs of this small group, said Jimmy Fearon, chief executive of Debra Ireland. This would allow for each bandage change to be provided by two nurses and create secure funding which would allow for a quick response to additional needs as they arise.

“Based on our most recent figures, 84 hours of home nursing care are required each week to meet the current needs of families across Ireland,” he said. 

“Many children and adults living with EB are struggling to get access to all the services and supports they need, with people often having to fight for these services at an individual level.” 

An estimated one in 18,000 babies born in Ireland are diagnosed with EB. Over 500,000 people have the condition worldwide.