Turning 30 is a milestone for anyone, but the occasion was especially significant for Emma Fogarty.

The Laois woman is the oldest living person in Ireland with her form of Epidermolysis Bullosa (EB), a condition that results in extremely fragile skin. Severity among those diagnosed varies, but Emma’s skin is so delicate that 70% of her body is covered in bandages.

Doctors told her parents she would only live for a week, but she has gone on to graduate from college, live away from home and pass her driving test.

“I always have been very determined,” she says. “I’ve learned that from my parents. They had to learn how to live with EB, but they were adamant I would live a normal life. They sent me to a regular school, encouraged me and pushed me along.”

Emma celebrated her 30th during the summer, which was marked by a party in Dingle hosted by Debra Ireland, a charity which supports people living with EB, and another one with friends and family at home.

Emma says reaching the landmark was an achievement, but it also frightens her.

“When I hear people moaning about turning 30, I think to myself, you have so many years left, how many do I have?” she says. “I have the worst living form of EB and I’m the fourth person to reach 30 years of age. It’s quite daunting, but if you keep thinking about that all the time you’ll drive yourself mad. I’m very determined to reach 40 and fight as hard as I can to get there.”

Life with EB involves constant pain. Emma’s bandages need to be replaced every two days, which is an agonising experience. She is on three different forms of morphine, which is “like Panadol” to her in terms of lessening the pain. The skin of a person with EB has been likened to the wings of a butterfly and even the slightest bump could result in serious injury.

“I didn’t walk until I was two and a half. It wasn’t that I couldn’t, it was the fear,” says Emma. “If you fall you’re going to do damage to yourself, but you can’t let it defeat you. I wanted to cycle and walk, so I did it.

“I love going out with my friends, but it’s nerve-racking because pubs are crowded and I have to measure how drunk people are and try to find a path where there is the least resistance. If someone fell on me, my night would be over.”

At the age of 18, Emma left home to study business and marketing in Limerick. Following her degree, she moved to Dublin where she worked for Permanent TSB for three years.

“My parents almost died,” she laughs. “But I was adamant that I wanted to go to college in Limerick. I moved out with a PA, who kind of became my mother. She did my bandages, helped with my medication and getting dressed. For 18 years I had my mam, so it was hard to trust someone new.

“There are a lot of complications with EB and one of them is osteoporosis. I broke my leg by just walking and I had to go into the wheelchair. I had to move home then. It was a big change for me and a very hard one, but I had no choice.”

However, Emma has gone on to pass her driving test, which she completed after being picked by Nissan as one of its Generation Next ambassadors.

“It means so much. I’ve wanted to drive for so long,” she says. “The car had to be adapted and there was a lot of work involved. It meant the world to me though and I couldn’t thank Nissan enough for the opportunity they’ve given me.”

Emma is also the patient ambassador for Debra Ireland. In this role, she gives advice to parents and people diagnosed with EB and raises awareness of the condition.

“Debra Ireland was founded in 1988. A group of parents, including mine, came together to form a support group,” she explains. “I’ve always been involved, but in the last seven years they gave me the title of patient ambassador and I get to do wonderful things and meet great people.

“We really have raised our profile a huge amount in recent years,” she continues. “It’s great to see people recognise us and EB as a disease. You wouldn’t believe the things people say when they don’t know what you have, someone asked my friend if I was in a fire.”

She also appeared on the Late Late Show in 2012 on behalf of Debra Ireland, to speak and see Michael O’Leary present a cheque of €100,000 to the charity.

“That was an amazing experience, as the Late Late is the biggest platform in Ireland. We got a fantastic response, with €16,000 in donations from the public after the show aired. We could never thank people enough,” she says.

Regardless of EB, it is clear that Emma lives life on her own terms.

“I have two choices:get up and fight, or sit in the corner and let EB take over,”she says.

“Life is for living and that’s what I do.”