DEBRA Ireland supports patients and families across Ireland and Northern Ireland living with EB. Families like Seamus.
“I’m the youngest of 5. I was born with no skin on my arms or my legs. The doctor in Monaghan knew there was something wrong and realised it was EB. I was sent to Crumlin the same day and remained there for about 5 months. My mum had to stay up in Dublin a lot at that time.”
Seamus was born with EB simplex. Like all those living with EB, his story is one of inspiration, determination and incredible strength.
For me, EB means always thinking and planning ahead. If I was to spend all day walking around town, I would pay for it the next day with blisters. I’m so aware of infection. Infection has nearly got me a number of times. It turns out I’ve an enlarged heart which is related to my type of EB. Infection from a cut somewhere else can put a lot of extra strain on my heart. That’s why I’ve to be so careful with minding a wound because if it gets infected, I can actually feel the strain on my heart. I’ve a defibrillator pacemaker fitted which will shock me if I go into heart failure.
I fainted in Rathmines when I was 20 and had to be admitted to intensive care in St James’ with a serious heart arrhythmia. I was put into a coma and was in hospital for 8 weeks.
But I can mind my EB. Like, I wouldn’t take up sport competitively but I can go and kick a ball around!
When I moved to Dublin to attend college, it was amazing to be able to just walk to St James’ and be seen by the EB team. You didn’t have to explain everything to them about EB. You could be unconscious and they’d know how to take care of you. And the DEBRA Ireland family support team would meet me for a coffee and a catch up which was really lovely.
When I was a teen, DEBRA Ireland would send letters to my mum but a letter would also come for me – in a different envelope – which I loved. It was the same letter but it was special because it was addressed to me. It meant a lot.
DEBRA Ireland make a huge difference to my life. Everything from the family support team, the respite grants, their care throughout Covid and of course research. There’s no other organisation in Ireland like them. You always have someone to phone if you’re in a difficult situation. They’re your advocate. Instead of fighting an uphill battle, you’re finally winning a little bit.”
To support families living with EB like Seamus, please donate to DEBRA Ireland today.
*Seamus collaborated with Sarah from our research team on the following research piece