A YOUNG Ballyroan woman who is battling a rare and very painful skin condition is urging local people to help others with the disease by wearing a butterfly tattoo.
Emma Fogarty has a severe form of the ‘butterfly skin’ disease EB (epidermolysis bullosa), which leaves 80% of her body covered in open wounds. The incredibly painful genetic condition causes the skin layers and internal body linings to blister and wound at the slightest touch. Now, 35-year-old Emma, like 300 other people in Ireland suffering with the condition, have to be bandaged from head to toe to protect them from everyday life. Emma is also the oldest surviving person in the country with the severe form of the disease.
She said: “I have chosen to live, but EB dictates my life on a daily basis. I am in a lot of pain a lot of the time. I am on a huge amount of painkillers, 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.
Emma said: “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.
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.
“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.
“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,” said Emma.