Fifteen Irish people attend EB conference in LA

Irish people suffering from Epidermolysis Bullosa (EB) have said that attending an international conference and meeting their peers has made them feel less alone.

The Debra Care Conference is held in the US every two years, and aims to bring together people with EB and their families, aswell as clinicians and researchers for four days.

Debra is a national charity supporting around 300 people living with EB in Ireland, and they brought 15 people from their community in Ireland ot the event in Los Angeles from July 26-29.

The conference sessions were spearheaded by EB specialists, and they addressed topics like care management, treatment approaches and guidance for living with EB.

Amanda Nugent from County Wexford, who was diagnosed at 37 and is now 48, said that travelling to the conference made her feel much less alone.

Amanda’s son and over 20 relatives in her extended family all suffer from EB simplex.

She said: “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. 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 have 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.”

Another member of the Irish contingent included Dubliner Claudia Scanlon, who praised her first-ever EB conference.

She said: “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. 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.”

“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 excruciatingly 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.”