Families battling rare condition ‘forced to fight for State support’

Liz and Claudia

The mother of a young Dublin woman battling an extremely painful skin condition has told how the lack of co-ordinated support from the State has made parents ‘prisoners’ in their children’s lives. Liz Collins from Terenure has had to deal with a multitude of agencies and carers in a 20-year battle to secure home nursing care for her daughter Claudia, who endures the most severe form of epidermolysis bullosa (EB).

“Every chapter of Claudia’s life brings new challenges, dressings have to be done 365 days a year; it’s a horrible place to be, like being stuck in a hole you can’t get out of,” said Ms Collins, speaking as national EB charity Debra launched its 2025 pre-Budget submission. “EB has shaped our whole lives because it was and still is in control, it is a monster.”

Debra, the charity that supports families and everyone with the painful genetic condition, claims that the current model of service is pushing families to fight unnecessarily for supports. It insists a ring-fenced fund of €600,000 for home nursing care would alleviate some of the heavy burden of the lifelong, incurable disease. 

While Claudia, 20, now has a level of home care, her parents do not have a care co-ordinator – also seen as central to joining together the different aspects of care. “Everything is a battle and nothing is straight-forward,” said Dublin-based Ms Collins. “Carers often feel like prisoners because the current level of care is fragmented, fragile and not properly co-ordinated. “Many people strongly make their case for support, they might win and get allocated home nursing hours but sometimes there’s no nurses to provide these hours, so it’s outsourced. “The managing of a care package, planning, scheduling and communication is key to properly looking after someone with EB.”

People with the condition are missing the essential proteins that bind the skin’s layers together, so any minor friction, movement or trauma causes it to break and blister. In Claudia’s case (recessive dystrophic EB), skin must be re-bandaged several times a week to prevent blister infection in a painful process taking hours at a time. Debra is also asking the Government to provide a further €95,000 in the 2025 health budget, to include *€45,000/annum for a specialist outreach nurse who would be able to manage complex wounds and infections for adults in the community, reducing the risk of hospitalisation;

*€30,000 for increased psychological support at St James’s Hospital to safeguard the mental health of EB patients, whose quality of life is affected by constant pain; *€20,000 to provide regional points of contact, support and advice for EB patients in Ireland as up to 15 sub-specialities can be needed for their care. “The emotional and physical toll on families is significant, with many carers feeling overwhelmed, isolated and out of their depth,” said Debra CEO, Jimmy Fearon. “We are calling on the Government to prioritise additional acute and regional supports to meet the unique needs of people living with or caring for someone with EB.”

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Sarah Brooks

Sarah has worked in marketing and content creation for many years. In her role at Newsgroup, she is the online editor of www.newsgroup.ie with a particular interest in local news and events. Sarah also works closely with our editorial team on our printed editions in Tallaght, Lucan, Clondalkin and Rathcoole/Saggart. If you have a story and would like to make contact please email Sarah at info@newsgroup.ie.



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