Laois butterfly skin award winner appeals for help

Conor Ganly

Reporter:

Conor Ganly

Email:

news@leinsterexpress.ie

Health - butterfly skin

Laois woman and Hidden Hero award winner Emma Fogarty,who has a severe form of the butterfly skin disease EB (epidermolysis bullosa) and Sabrina Langford. Pic: Brian Reilly Troy, Workhorse Photography

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.

"There are just no words to describe the pain, strong pain killers barely touch it and I'm finding it more difficult to get out and about – even being out for three or four hours will leave me crying with pain," said Emma.

October 23-29 is National EB Awareness Week and Debra Ireland, the charity that provides hope and support for EB patients and their families, is trying to fight the effects of this devastating disease by creating a 'butterfly effect' to raise both funds and awareness.

"We are asking people to help by picking up a Debra Ireland Butterfly Tattoo at any Applegreen service station and texting the word BUTTERFLY to 50300 to make a €4 donation," said Emma.

"We are also asking people to spread the word by taking a selfie of their tattoo and sharing it on social media to create awareness and be part of the #butterflyeffect."

Emma, who is 33, is the oldest person in Ireland with severe EB.

Last year she was presented with 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 hardest part, it has to be done extremely slowly as removing a bandage can pull away skin that may be healing, the pain levels are intense, there are always tears and I know my mother finds it very upsetting to watch it," said Emma.

The Laois woman's health has not been good recently with several long stays in hospital required in the last year.

"Unfortunately, I've had infection after infection," said Emma.

She explains how severe EB affects every part of her body.

"My throat is blistered and scarred internally so I can only swallow soft, liquidised food, sometimes even ice cream won't go down.

"Blistering on the eye itself is another problem, the pain is so severe and you just can't open your eyes.

"Even something as simple as a sneeze can be a problem because if I sneeze too hard the skin on my nose can come out."

"With EB every little bit can hurt but a little Debra butterfly can help so do please pick one up at any Applegreen," said Emma.

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).

EB is a very distressing and painful condition which causes the skin layers and internal body linings to blister and wound at the slightest touch.

Due to the presence of constant wounds, patients with a severe form of EB are susceptible to a very aggressive form of skin cancer, from as early as their teenage years.

Debra Ireland is striving to end this heartache and pain by funding high level research programmes to find treatments and cures for EB and skin cancer.

Text BUTTERFLY to 50300 to donate €4 to Debra Ireland.

Text costs €4. DEBRA Ireland will receive a minimum of €3.25. Service Provider: LIKECHARITY. Helpline: 076 6805278.