How do you bring attention to a skin disease EB so rare that the most senior dermatologist in Ireland described it as “the most devastating condition you’ve never heard of?” You enlist the help of a ten year old living with it, Claudia Scanlon (10).
DEBRA Ireland, the only charity in Ireland that provides services and support to families and patients living with the rare skin disease epidermolysis bullosa (EB), had a mission in October 2014: to release 100,000 butterfly tattoos across Ireland for 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 to the skin can cause it to blister and wound.
Release Your Butterfly Campaign
The ‘Release Your Butterfly’ campaign objective was simple – on 24th October 2014, everyone in Ireland would wear a butterfly symbol in support of patients with EB. DEBRA Ireland distributed 100,000 temporary butterfly tattoos to supporters around Ireland and asked them to STICK, SNAP and SHARE them on the day across social media using #releaseyourbutterfly. And they did!
Celebrities such as Colin Farrell, Johnny Sexton, Robert Sheehan, Kathryn Thomas, the RTE soccer panel (Eamon Dunphy, John Giles, Liam Brady), Conor McGregor, Bill O’Herlihy and Kenneth Egan all lent their support.
Claudia is one of 300 people in Ireland living with the 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 (70% of Claudia’s body is covered in bandages).
The campaign has already raised an incredible €60,000 from donations which will go towards the €100,000 needed for the EB Community Care Programme where a DEBRA funded EB specialist nurse will bring medical care into patients’ homes while also training the local medical community. This will transform lives because nurses will have a true sense of patients’ needs and circumstances.
How You Can Help
You can also help to support DEBRA Ireland by texting BUTTERFLY to 50300. (All €4 goes to DEBRA unless a provider applies VAT when a minimum of €3.25 will go to DEBRA. Service provider LikeCharity: 0766805278)
DEBRA Ireland and EB (Epidermolysis Bullosa)
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 the genetic skin condition, epidermolysis bullosa (EB). Patients who have 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 leads to disability and deformity. Many patients who survive childhood face the frightening reality that they could develop a very aggressive form of skin cancer, due to the constant breakdown of their skin.
For more information on DEBRA Ireland and EB visit www.debraireland.org