Wexford Woman Living with Rare Skin Condition Says International Conference Made Her Feel 'Less Alone'

A Wexford woman living with the rare genetic skin condition Epidermolysis Bullosa (EB) has described attending an international conference in the United States as an emotional and empowering experience that helped her realise she is not alone.

Amanda Nugent from Newbawn, who was diagnosed with EB simplex at the age of 37, travelled to Los Angeles with other members of Ireland's EB community to attend the Debra Care Conference, organised every two years by the international EB community.

The four-day event brought together people living with EB, their families, clinicians and researchers from around the world to share experiences, discuss the latest treatments and provide support for those living with the condition.

The trip was organised by Debra Ireland, the national charity supporting the approximately 300 people living with EB in Ireland, with 15 members of the Irish EB community travelling to the conference.

Amanda said that until adulthood, she believed her family were the only people living with the condition.

"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," she said.

Amanda's 13-year-old son, Ruaidhri, also lives with EB simplex, while more than 20 members of her extended family have the condition.

She described meeting children and adults living with different forms of EB as an emotional experience.

"Getting to talk to them, learn from them and having laughs with them has been the most memorable part. 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."

Amanda said the conference had given her valuable knowledge and renewed confidence to support herself, her son and her wider family.

The conference featured presentations from leading international EB specialists covering advances in treatment, care management and practical advice for people living with the condition.

Debra Ireland CEO Jimmy Fearon said bringing members of Ireland's EB community to the conference marked an important milestone.

He said many people living with EB in Ireland may never meet another person of a similar age or with the same type of the condition, making the opportunity to connect with others internationally especially significant.

Mr Fearon added that the conference also provides access to information on emerging therapies and cutting-edge treatments that may not yet be available in Ireland.

Epidermolysis Bullosa is a rare inherited skin condition that causes the skin to blister and tear easily, often after even minor friction or contact. Debra Ireland estimates that around 300 people are living with the condition nationwide.