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Tuesday 16 September 2014

'I was given a week to live. I’m 29 and still living my life'

'You can either live it, or sit in a corner and dwell on it. That will get you nowhere.'

Published 08/04/2014 | 17:05

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Pic credit: Twitter/DebraIreland

Despite daily pain from rare skin condition, Emma Fogarty is still thankful to be alive

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The 29-year-old suffers from a rare skin condition Epidermolysis Bullosa (EB) and was told she had just one week to live when she was born.

Emma's illness means that around 70pc of her body is covered in bandages because of her fragile skin, which she compares to “the wings of a butterfly”.

Despite the fact she is on a number of different medications and experiences pain every day, she told Ryan Tubridy on 2FM that she is grateful to be alive and is determined to live her life to the full.

“You are given a life to live,” she said today.

“You can either live it, or sit in a corner and dwell on it. That will get you nowhere.”

EB is a blistering of the skin and while for most people blisters dry up and go away, hers continue to grow and grow and must be burst.

“When they are burst they become open wounds,” she explains.

“These wounds need dressing and can take weeks to heal. The longest wound I have had lasted for 18 months.”

Her mother had a “normal” pregnancy, but quickly it was obvious that Emma was different to most newborns.

“I was born in Kilkenny with no skin on my left foot and right arm.”

“The doctors had no idea what was wrong, but they knew something wasn’t right,” she said, adding that she was quickly taken to Crumlin hospital.

It was here that her parents were  given the awful news that their first child would be unlikely to live longer than seven days.

With no Debra Ireland in existence and little knowledge on the area of EB, Emma credits her survival to the diligent work of her parents.

“They looked after me and went as they could.”

“I couldn’t wear tights as a young girl as they would stick to my open wounds and they had to go to the UK to learn how to do my bandages.”

She cannot eat in the mornings and cannot digest solid foods because of her condition. If she falls, she “cries like a two year-old” because of the severe pain. Some of her fingers have fused together and she only has movement of her thumbs. Yet still maintains a glass half full attitude to life, conceding that some days can be very difficult.

“It was hard and it still is,” she concedes.

“You have your bad days, you think ‘Why is this happening to me?’, but my parents taught me to be determined and to fight.”

Emma has displayed determination throughout her life and is delighted that she has been able to highlight the condition and raise awareness.

She also credits Michael O’Leary, who donated €100,000 from the Ryanair calendars towards their funds and has also thanked the general public for their generosity with their donations.

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