爱尔兰的乙型六氯环己烷患者缺乏一贯的护理、供应和支持,促使人们呼吁改善供资和协调。 Ireland’s EB patients lack consistent care, supplies, and support, prompting calls for better funding and coordination.

一份新报告显示,爱尔兰大约300名患有表皮溶解 (EB) 的患者的护理存在严重缺陷, 这是一种罕见的,痛苦的皮肤疾病, A new report reveals significant gaps in care for Ireland’s approximately 300 people with epidermolysis bullosa (EB), a rare, painful skin condition causing severe blistering from minor friction. 患者难以持续获得基本伤口护理用品,没有强迫自费的国家绷带计划,心理和牙科支助不足。 Patients face inconsistent access to essential wound care supplies, no national bandage scheme forcing out-of-pocket costs, and inadequate psychological and dental support. 家庭护理服务因人员短缺和培训不足而紧张。 Home nursing services are strained by staff shortages and poor training. 金融和福利系统复杂且难以驾驭，让许多人，包括像阿曼达·纽金特和莉兹·柯林斯的女儿这样的严重病例，感到被忽视和得不到支持。 Financial and welfare systems are complex and difficult to navigate, leaving many, including severe cases like Amanda Nugent and Liz Collins’ daughter, feeling invisible and unsupported. 由Debra慈善机构委托进行的EB“蝴蝶审查”建议改善家庭护理、简化福利准入和负担得起的医疗用品。 The EB Butterfly Review, commissioned by charity Debra, recommends improved home nursing, simplified benefits access, and affordable medical supplies. Debra的首席执行官指出,圣詹姆斯医院在为综合护理和心理健康服务争取专项年度资金方面取得了进展,病人和照顾者敦促提供协调的支助,以减轻情感和财政负担。 Debra’s CEO noted progress in securing dedicated annual funding for integrated care and mental health services at St James’s Hospital, with patients and caregivers urging coordinated support to reduce the emotional and financial burden.