A TERENURE family whose teenage daughter has a rare and painful skin condition is asking local people to help support her by wearing a special butterfly tattoo this week.
13-year-old Claudia Scanlon from Whitehall Road 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, Claudia has to be bandaged almost from head to toe to protect her from everyday life.
Mum Liz says: “EB dictates every aspect of her life. At this stage, she is used to constant pain and bandaging. It’s the lack of social acceptance of people with EB that can be the most hurtful.”
National EB Awareness Week is currently under way until October 29, and Debra Ireland – the charity that provides hope and support for EB patients and their families – is trying to fight this devastating disease by creating a ‘butterfly effect’ to raise both funds and awareness.
Liz says: “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.
“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.”
Mum Liz and dad Gary try to ensure that despite her condition Claudia – a second year pupil at St Louis High School, Rathmines – has as normal a life as possible.
Liz says: “Clausia’s EB is causing her fingers to fuse together, so she is losing the power in her hands, but the school is scribing for her.
“Claudia has also recently started ballet, which is almost unheard of for an EB child. I don’t know how she puts her poor feet through it, but she loves it.”
A devoted GAA supporter, Claudia goes to all the Dublin games and every Saturday she helps out with the younger players at Kevin’s Hurling and Camogie club in Crumlin.
As well as providing day-to-day help and support for EB patients and their families, Debra Ireland also funds research programmes to find better treatments and possible cures for EB.