22/10/2025
A mother who suffers from the severe condition known as โbutterfly skinโ says she feels โinvisible to the Stateโ and struggles to go to work even on days when she can barely stand.
Amanda Nugent (47), from Newbawn, Co Wexford, suffers from epidermolysis bullosa (EB), a rare condition that causes the skin to tear and blister at the slightest touch.
People who have the condition need to undergo painful bandaging to prevent infection, which in severe cases, must be changed daily.
The โEB Butterfly Reviewโ by EY found โserious systemic gapsโ are limiting patientsโ quality of life, with access to essential wound care materials and medication inconsistent.
It highlights the lack of a national bandage scheme, leaving those with a less severe forms of EB to foot the bills with considerable financial strain.
Ms Nugent said: โYouโre punished in every single way. Because of my type of EB, I canโt access medical cards. Iโm not entitled to long-term illness, to disability, yet I have one of the rarest conditions in the world.โ
She told how she is forced to borrow plasters and bandages from her 12-year-old son Ruaidhri, who also lives with EB simplex โ one of more than 20 relatives in her extended family with the condition
