'I was screaming in pain' - Charity calls on Govt to ringfence funding for EB sufferers

An Irish charity is urging the Government to ringfence funding in Budget 2024 to help those living with a rare and incurable skin condition. 

In a pre-Budget submission called 'Small Ask, Big Impact', Debra Ireland is asking for just €810,000 to support the estimated 300 people in Ireland living with Epidermolysis Bullosa (EB). 

EB or ‘Butterfly skin’ is caused by the absence of proteins which bind the skin together, creating excruciating blistering at the mildest touch or movement; in some severe cases, bandaging every 24 hours is required. 

Debra's Head of Advocacy, Joanna Joyce, said, "Bearing in mind the lifelong pain, physical and mental trauma that people go through with EB, what we are looking for is a tiny fraction of the current €23 billion health budget. 

"In fact, when calculated, the €810,000 ask registers as 0.003% of that total." 

She continued: "In many cases, EB is an invisible condition which has a hugely negative impact on people’s lives, yet those living with it are still struggling to access vital supports and services.   

"A big gap that we see is the lack of a central point of contact in the community for a family to liaise with, so that they can be signposted to help and supports." 

According to Debra, the €810,000 investment is desperately needed to fund a number of crucial roles. 

This includes a care co-ordinator (€75,000), a clinical psychologist for specialist mental health assistance (€80,000), a fund for home nursing care for people living with the most severe forms of EB (€580,000), and an EB outreach nurse based in St James' Hospital for support and infection assessment at home (€75,000). 

The funding would support those with the four main types of EB; simplex, junctional, dystrophic and kindler. 

Dubliner Aoife Murdock (42) lives with EB simplex, and spoke of how the condition leaves her “wrecked” when she has a big flare up.    

She said, "It’s really, really draining on your system as a whole.   

"It just makes everything so much harder. It’s an unseen illness. There are times you would love help, but you can’t get it and don’t feel you can ask for it." 

Laois woman Emma Fogarty, who lives with recessive dystrophic EB, said, "Up to the age of 28 my mom was doing my dressings. That’s not OK, that’s not good enough. 

"There were days when I was screaming in pain, and she felt she was causing it. She wasn’t causing the pain; EB was." 

Based on the estimated 300 people living with EB in Ireland, the investment Debra is seeking would cost the Government €7.40 per person a day, or two cups of takeaway coffee.