Brave Terenure teen is raising awareness of ‘Butterfly Skin’

by Rachel Darcy

[vc_row][vc_column width=”2/3″][vc_column_text]The family of a teenage girl from Terenure who suffers from a rare, painful skin condition are appealing to the public to aid in raising awareness by wearing a special tattoo this week.

14-year-old Claudia Scanlon from Whitehall Road in Terenure, has a severe form of the ‘butterfly skin’ disease EB, epidermolysis bullosa, which leaves 80% of her body covered in open wounds.

The genetic condition is so incredibly painful that the skin layers and internal body linings to blister and wound at the slightest touch.

Claudia has to be bandaged almost from head to toe to protect her from everyday life, and is one of only 300 people in Ireland with EB.

She is leading a campaign for National EB Awareness Week, which is currently running from October 22-28, encouraging the public to look at the person behind the illness.

Liz Collins, Claudia’s mum, said: “We are asking people to ‘see me – not EB’, the pain and constant bandaging are awful, but it is the lack of social acceptance that can be the most hurtful thing.”

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

Despite the difficulties that come with EB, Liz and Claudia’s dad Gary try to ensure that she has as normal of a life as possible while she studies for her Junior Cert at St Louis High School in Rathmines.

Liz said: “As a teenage girl she wants to be out in society but she can feel left out and she has been very hurt by being excluded.

“EB dictates her life, she can’t even take something as simple as a bus journey on her own, as she can’t risk a fall or being bumped into.

“With social media too, everything is about appearances which can be very tough, but beneath the bandages is a teenager with similar emotions, ideas and interests as others her age.”

Liz says the family have learned how to live with this incredibly painful and difficult condition.

“We have a massive acceptance of EB, instead of the illness we focus on the positive and what Claudia can do.”

Debra Ireland, the charity that supports EB patients and their families, is asking people to show their support during National EB Awareness Week by picking up a Debra Butterfly Tattoo at Applegreen service stations, or to text the word BUTTERFLY to 50300 to make a €4 donation to the charity.

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.

Liz said: “The research Debra supports could transform the lives of people like Claudia 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.”[/vc_column_text][/vc_column][vc_column width=”1/3″][/vc_column][/vc_row]

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