More than 200 people affected by epidermolysis bullosa (EB), often known as “butterfly skin”, gathered in County Meath over the weekend for what organisers described as the largest gathering of Ireland’s EB community to date.
The two day event, organised by Debra Ireland, brought together children, adults and families from across the country for a weekend of support, friendship and shared experiences at the Pillo Hotel in Ashbourne and Emerald Park.
An average of 300 people in Ireland live with epidermolysis bullosa, a rare inherited condition that causes the skin to blister and tear at the slightest touch due to missing proteins between the skin layers.
More than 200 people from the EB community came together on June 20 and 21 for what has become one of the highlights of the Debra calendar.
“This event is now firmly established as one of the highlights of the Debra calendar and our Summer Extravaganza was the biggest and best yet,” said Alejandra Livschitz, Head of Communications for Debra, the national charity supporting those living with EB.
“There’s something about being in a room where you don’t have to explain anything, where the bandages, the questions and the careful hugs all just make sense.
“That’s what this weekend is about, connection, kids being kids and parents finding people who just get it.”
On Saturday, attendees gathered for an afternoon of research talks, including a presentation from two members of the Debra International Youth Council.
Lena Riedl from Austria and Ida Steinlein from Norway shared their experiences of living with EB and highlighted the work young people are doing to advocate for the community on a global stage.
“Lena and Ida’s presentation was a reminder of just how much the next generation of the EB community has to say, as well as how valuable it is for young people to support each other across borders,” said Ms Livschitz.
“Families in the room said hearing directly from young adults living confidently with EB was one of the most moving moments of the weekend.
“A huge thanks to SMBC Aviation Capital, whose generous funding supported the Summer Extravaganza and will continue to do so over the next two years.”
On Sunday, the event moved to Emerald Park where families enjoyed rides, a petting zoo and a range of attractions suitable for all ages and abilities.
As walking and standing for long periods can be particularly difficult for people living with EB, Debra worked to ensure the venue was as accessible as possible. Mobility support, rest areas, a dedicated quiet room and Queue Assist passes were all provided to help families enjoy the day comfortably and safely.
