Laois woman's appeal - "There are just no words to describe the pain"

Laois woman in butterfly skin help appeal

Leinster Express Reporter


Leinster Express Reporter


 Robert Sheehan Emma Fogarty  Debra Laois

Laois actor Robert Sheehan supports Emma Fogarty Debra Laois.

A young Laois woman, who has won an award for her courage in battling a rare and very painful skin condition, is asking local people to help others with the disease by wearing a special butterfly tattoo this week.

Emma Fogarty, 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.

One of only 300 people in Ireland with EB, Emma has to be bandaged from head to toe to protect her from everyday life.

"Almost every part of my body is affected with constant blisters and sores, and there are just no words to describe the pain, strong painkillers barely touch it," said Emma.

October 22-28 is National EB Awareness Week and Debra Ireland, the charity that supports EB patients and their families, is asking people to help.

"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.

As Debra's Patient Ambassador Emma is leading the charge in the charity's campaign encouraging the public to see the person behind the illness.

"We are asking people to 'See Me – Not EB', said Emma.

"Staring is a very big issue for people with EB, when people look at me they see the bandages, they see my fused hands, they look at the wheelchair – but often they don't see me.

"If they did we could discover that we have things in common, we might enjoy the same music or support the same football team."

At age 34 Emma is the oldest person in Ireland with severe EB and she has been awarded a Hidden Heroes Courage Over Adversity Award for her bravery in battling this devastating condition.

Emma's body is 80% covered in bandages which have to be changed every two days, an extremely painful process that takes several hours.

"Bandaging is the worst, the pain levels are intense and there are always tears."

Debra Ireland provides day to day help and support for EB patients and their families. The Charity also funds research programmes to find better treatments and possible cures for EB.

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

"The research Debra supports could transform the lives of people like me and it is now at a stage where every euro can make a vital difference to the future lives of people living with this condition," she said.

Debra Ireland was established in 1988 to provide patient support services and drive research into treatments and cures for those living with the genetic skin condition EB (epidermolysis bullosa).