How do you bring attention to a skin condition so rare that Ireland’s most senior dermatologists once called it “the most devastating condition you’ve never heard of”? You enlist the help of a ten-year-old living with it.
That’s exactly what happened when Claudia Scanlon, then just ten years old, became the face of DEBRA Ireland’s Release Your Butterfly campaign — a nationwide effort to raise awareness of epidermolysis bullosa (EB), a rare and painful skin condition.
DEBRA Ireland is the only charity in Ireland that provides services and support to families and patients living with EB. The butterfly is the charity’s symbol because those living with EB have skin as fragile and delicate as the wings of a butterfly, and just as easily damaged — the slightest touch can cause blistering and wounds.
The Release Your Butterfly Campaign
The idea behind Release Your Butterfly was simple: for one day, people across Ireland would wear a butterfly symbol in support of patients with EB. DEBRA Ireland distributed 100,000 temporary butterfly tattoos to supporters, who were asked to stick them on, snap a photo, and share it on social media using #releaseyourbutterfly.
The campaign drew support from well-known names including Colin Farrell, Johnny Sexton, Robert Sheehan, Kathryn Thomas, the RTÉ soccer panel (Eamon Dunphy, John Giles, Liam Brady), Conor McGregor, Bill O’Herlihy and Kenneth Egan.
But the real star of the campaign was Claudia Scanlon, whose courage inspired everyone who heard her story.
Claudia was one of around 300 people in Ireland living with EB, an incredibly painful and debilitating skin condition. There is no cure for EB, and the only treatment available is lancing painful blisters and bandaging open wounds to prevent infection — at the time of the campaign, around 70% of Claudia’s body was covered in bandages.
The campaign raised significant funds for DEBRA Ireland’s EB Community Care Programme, supporting a specialist EB nurse who brings medical care directly into patients’ homes and trains local medical teams. This kind of home-based care makes an enormous difference, giving nurses a true understanding of each patient’s needs and daily circumstances.
About DEBRA Ireland and EB
DEBRA Ireland is the national charity established in 1988 to provide patient support services and to drive research into treatments and cures for those living with epidermolysis bullosa (EB). People with EB have skin that is as delicate and fragile as the wings of a butterfly, and just as easily damaged. The condition is extremely painful and can lead to disability and deformity. Many patients who survive childhood face the frightening reality that they could develop an aggressive form of skin cancer, caused by the constant breakdown of their skin.
For more information on DEBRA Ireland’s current work, and on how families can access support, visit www.debraireland.org.
Frequently Asked Questions
What is epidermolysis bullosa (EB)?
EB is a rare, genetic skin condition that makes the skin extremely fragile — so fragile that even gentle friction can cause painful blistering and open wounds. There is currently no cure, and treatment focuses on managing wounds and preventing infection.
Why is the butterfly the symbol for EB?
The butterfly represents how fragile and easily damaged the skin of someone living with EB can be, much like a butterfly’s wings.
Who was Claudia Scanlon?
Claudia was a ten-year-old girl living with EB who became the public face of DEBRA Ireland’s Release Your Butterfly campaign, helping raise awareness and funds for EB patient care in Ireland.
How can I support DEBRA Ireland today?
DEBRA Ireland continues to support families living with EB across Ireland. Visit their website for current information on donating, fundraising, or accessing patient services.
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