Irish people living with a rare, genetic skin disease, including a woman from Dublin, have said attending an international conference where they could meet their peers made them feel less alone.
The Debra Care Conference takes place every two years in the United States and brings together individuals with Epidermolysis Bullosa (EB), families, clinicians and researchers for four days of learning and connection.
Debra, the national charity that supports the on average 300 people living with EB in Ireland, brought 15 Irish EB community members to the event in Los Angeles from July 26-29.
For 22-year-old Dubliner Claudia Scanlon, this was her first ever EB conference.
“It’s very cool to see numerous people in a room with dystrophic, simplex, junctional EB – it’s been a real eye-opening experience from start to finish,” she said.
“I got to meet so many like-minded people who have gone through similar challenges and I definitely want to come back for the next one.”
Mum-of-one Amanda Nugent, 48, who was diagnosed at age 37, said travelling to the conference made her feel less alone.
“Ever since I was a child and up until I was 36, I thought myself and my family were the only ones who had EB – how wrong I was,” said Amanda from Newbawn, Co Wexford.
Her 13-year-old son Ruaidhri also lives with EB simplex, along with over 20 relatives in her extended family.
“To come to LA and see all the kids and adults that have all types of EB has been very emotional.
“Getting to talk to them, learn from them and having laughs with them has been the most memorable for me – everyone has been so friendly and welcoming.
“No matter what type of EB we have we are all one here, we are all seen, we are all heard and we are all loved by so many.
“The talks have been so informative, and I feel more empowered for myself, my son and my family through all that I have learned.”
Conference sessions are spearheaded by leading EB specialists and address topics such as care management, treatment approaches and practical guidance for living with EB.
“Travelling to the Debra Care Conference with members of our EB community is a first for Ireland and we hope it is something we will be able to facilitate for years to come,” said Debra CEO Jimmy Fearon.
“Its programme highlights emerging therapies and advancements towards cutting-edge treatments for this excruciating rare genetic skin disease, which may not yet be available to us here.
“In Ireland, someone might not meet another person of the same age or with the same type of EB in the whole country.
“This conference offers the chance to build an international community, to feel understood and to bring new friendships, as well as insights and ideas, home.”