A South Dublin woman has said living with an extremely painful "unseen illness" makes everything "so much harder" as a charity urges the Government for funds to help those living with the condition.
42-year-old Aoife Murdock from South Dublin is just one of the estimated 300 people in Ireland living with the incurable and extremely painful epidermolysis bullosa (EB). The condition, also called ‘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.
Aoife said the disease leaves her "wrecked" once she has a big flare up. She added: “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."
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National charity Debra which helps people living with the condition has urged the Government to ringfence €810,000 in Budget 2024. They say it would cost "two coffees a day" to protect those living with a rare and incurable skin condition.
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 €23billion health budget. In fact, when calculated, the €810,000 ask registers as 0.003 per cent of that total."
She added: "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.”
The charity’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. The funding would support those with the four main types of EB - simplex, junctional, dystrophic and kindler.
Debra says in addition to the care co-ordinator costing €75,000, the €810,000 investment is also desperately needed to fund a clinical psychologist supporting adults and a ring-fenced fund for home nursing care to look after people living with the most severe forms of EB, who require frequent bandage changes.
As well as this, the potential funding would support an EB outreach nurse based in St James’ Hospital, Dublin, supporting adults and providing an essential link between hospital and community and supporting infection assessment at home (€75,000).
The charity is also asking families and 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.
For more information, see Debra's official website.
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