Wexford Woman Highlights Struggles of Living with "Butterfly Skin" in Wake of Care Gaps Report

An independent report has uncovered serious gaps in the care of people living with epidermolysis bullosa (EB), a rare and incurable skin condition. Known as "Butterfly Skin," EB causes the skin to tear and blister with the slightest touch, leading to chronic pain and the need for daily bandaging to prevent infection. An investigation into the care of the 300 people in Ireland living with EB found that home nursing services are affected by staff shortages, high turnover and limited training. The EB Butterfly Review , commissioned by Debra Ireland, found that patients' quality of life is being severely impacted by systemic issues. Access to essential wound care materials and medication is inconsistent, and Ireland lacks a national bandage scheme, meaning those with less severe forms of EB often bear the financial burden. The report also highlights a lack of psychological and dental support, with financial and welfare services described as "complex and exhausting." Debra Ireland is calling for urgent changes, including high-quality home nursing services, improved access to financial support and better access to medications and wound care materials. The charity also recommends providing specialist care closer to home and improving healthcare staff’s understanding of EB and specialized wound care. Debra’s CEO, Jimmy Fearon, has urged the Government and HSE to secure annual, ring-fenced funding to support integrated and sustainable nursing care, which would greatly ease the burden on EB patients and their families. Today (Wednesday October 22), people living with EB and their families will share their concerns with TDs and Senators in Leinster House. Amanda Nugent, 47, from Newbawn, Co Wexford, who has lived with EB since the age of 37, says the lack of coordinated care makes her feel “invisible to the State.” Nugent, whose 12-year-old son Ruaidhri also has EB, says she must borrow plasters and bandages from him due to the lack of support. Nugent’s experiences are echoed by others, including Dubliner Liz Collins, whose daughter Claudia has one of the most severe forms of EB. Collins describes the experience as "like being stuck in a hole you can’t get out of" and says carers often feel trapped due to the fragmented and inconsistent care system. The report’s findings underline the urgent need for a more coordinated and compassionate approach to EB care in Ireland. Amanda Nugent, pictured with her son Ruaidhri at home in Wexford, says that because of her type of EB, she is unable to access medical cards, long-term illness or disability benefit, despite having one of the rarest conditions in the world. Picture: Elle Nugent Traynor.