'I was screaming in pain' Laois EB sufferer calls for Budget 2024 funding
A Laois woman who lives with an incredibly painful skin disease, is joining with her support charity to demand more state funding.
Emma Fogarty from Abbeyleix is backing a call by Debra for more money in Budget 2024 to support the 300 people living with the extremely painful incurable epidermolysis bullosa (EB) in Ireland.
“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.” Emma said.
The charity is urging the Government to give the cost of two coffees a day to protect those living with EB, just €7.40 more for each patient, or €810,000 in total to be ringfenced in Budget 2024.
Debra’s ‘Small ask, big impact’ Pre-Budget Submission outlines four key requests – including a care co-ordinator within the HSE to link Ireland’s entire EB community to supports.
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 severe cases requiring bandaging every 24 hours.
“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 €23billion health budget,” said Joanna Joyce, Head of Advocacy with Debra.
“In fact, when calculated, the €810,000 ask registers as 0.003% of that total.
“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.”
Debra says in addition to the care co-ordinator costing €75,000, the €810,000 would fund a clinical psychologist supporting adults to access specialist mental health assistance.
It would also pay for home nursing care for people with the most severe forms of EB, and an EB outreach nurse based in St James’ Hospital, Dublin.
The charity is also asking supporters to retweet and tag Minister for Health Stephen Donnelly in a bid to secure a meeting to outline the importance of the pre-Budget requests. See debra.ie.