‘I do believe that EB has robbed me of a future, has robbed me of the life I should have lived’

Emma Fogarty is the longest living person in Ireland with epidermolysis bullosa – known as butterfly skin

Brave butterfly skin syndrome sufferer Emma Fogarty has admitted her “heart breaks” when she thinks of the life the painful condition has robbed her of.

The 41-year-old is the longest living person in Ireland with epidermolysis bullosa – known as butterfly skin. EB leaves Emma with painful sores all over her body as her skin falls off at the slightest contact.

Emma, who made headlines last year when she completed the Dublin City Marathon with her Hollywood pal Colin Farrell, told the Grief Pod what the condition means for her daily life.

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She said up to 80% of her body needs to be bandaged daily, a process which takes up to four hours, with only her face, neck and stomach left exposed.

Emma added: “It basically means my skin is as fragile as the wings of a butterfly. Up to 80% of my body is covered in open wounds and when I say open wounds, doctors describe it as third degree burns. Those wounds have to be changed every day, which takes four hours. That’s my life.”

She told Grief Pod presenter Venetia Quick how doctors initially didn’t think she would survive when she was born.

Emma said: “They baptised me and then I was rushed to Crumlin Hospital. The doctors told my parents I wouldn’t survive a week and it would be better off if I didn’t.” However, Emma managed to defy the doctors as her parents got to bring her home at three months old.

Emma said: “I do believe that EB has robbed me of a future, has robbed me of the life I should have lived. I will never hold a career, walk down the aisle with my father and never have children. My heart breaks for that Emma who has lost everything.”

However, she insisted she would keep fighting to live the best life that she can. She added: “You either sit in the corner and end up dying or you live the life you’ve been given and that’s what I’ve decided to do.”

Emma admits she does still have a fear of dying. She added: “Yeah, I’m only 41 and it’s certainly not time and I don’t feel ready to go.” There are 300 people in Ireland with forms of EB but there is no known cure. Emma says the charity, Debra Ireland, who she works with, is doing “crucially important” research.

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