‘EB has shaped our whole lives, it’s a monster’ – mum of Dublin woman with ‘butterfly skin’ disease in plea for better care

Claudia Scanlon, who suffers from epidermolysis bullosa, a painful condition that leaves her skin in need of regular rebandaging

Eilish O'Regan

The family of a young woman with a rare and excruciating disorder – often ­described as “butterfly skin” – have said they are “prisoners” because of gaps in her care.

Claudia Scanlon (20), from Dublin, suffers from the most severe form of epidermolysis bullosa (EB), which leaves her skin so fragile she is covered in bandages.