WATCH: 'EB has stolen my future' Brave Laois woman leads Butterfly Week

Lynda Kiernan


Lynda Kiernan

A young Laois woman who is battling a rare and very painful skin condition is asking local people to help others with the disease by wearing a butterfly tattoo this week.

Emma Fogarty, 35, from Ballyroan has a severe form of the ‘butterfly skin’ disease EB (epidermolysis bullosa) which leaves 80% of her body covered in open wounds.

This incredibly painful genetic condition causes the skin layers and internal body linings to blister and wound at the slightest touch.

Emma has to be bandaged from head to toe to protect her from everyday life.

One of only 300 people in Ireland with EB, Emma is also the oldest surviving person in the country with the severe form of the disease.

“I have chosen to live but EB dictates my life on a daily basis,” said Emma.

“I am in a lot of pain a lot of the time. I am on a huge amount of pain killers but I’m becoming immune to even the strongest forms of pain relief.”

October is National EB Awareness month and Debra Ireland, the charity which supports EB patients and their families, is asking people to help. (EB Awareness Week 21-27 Oct)

"Please pick up a Debra Ireland Butterfly Tattoo at any Applegreen service station and text the word BUTTERFLY to 50300 to make a €4 donation," said Emma.

Life is very difficult for Emma as the bandages which cover 80% of her body have to be changed daily and this extremely painful process can take several hours.

“I have to do a two-hour emergency change every day, followed by a four-hour overall bandage change every second day. The routine is totally exhausting and I can’t sleep with the pain.”

Despite being in almost constant pain Emma is determined to make the best of her life.

“I was born with this condition and you have to decide whether you want to live or die. I want to live, I have a wonderful family, great friends and I love being a patient ambassador for Debra Ireland. You have to stay positive to get through living with EB.”

Emma is a big supporter of the charity's campaign encouraging the public to see the person behind the illness.

"We are asking people to 'See Me – Not EB' and it is hugely important, said Emma.

“I’ve had people staring at me while I’m sitting in a café or on the street. I can understand a child but how an adult can do that just baffles me. If you see the person beyond the illness you might discover you have things in common, such as a love of music or sport or other interests.”

Emma says local people can help by calling into any Applegreen station for their Debra Ireland Butterfly tattoo.

“Debra is an amazing charity. It provides nurses and patient support workers bringing help directly to families and it funds important research, not just to find cures but to find new and better treatments. Debra is always there supporting you no matter what.”