She's pleading for more support from the government.
A midlands woman suffering with a painful skin condition says government budget funding is what sufferers 'deserve.'
Abbeyleix's Emma Fogarty is calling for the government to invest almost a million euro annually in services for Epidermolysis Bullosa patients in Ireland.
Also known as 'butterfly skin', the disease causes skin to blister at the slightest touch and often requires extensive, painful bandage changes.
Ms. Fogarty is fronting up the campaign for Debra Ireland, who are calling for at-home nursing care for severe cases, an outreach nurse, and a clinical psychologist in their pre-budget submission.
She says patients should not have to live like they currently do:
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