A Galway man battling epidermolysis bullosa (EB) has told how Medical Alert Cards will help healthcare professionals learn more about the painful skin condition.
EB charity Debra developed the new information cards to further protect the 300 people living in Ireland with the rare disorder.
The aim is to encourage staff in doctors’ surgeries, hospitals and other healthcare settings to be extremely careful with the skin of patients, which is ultra-fragile and can blister at the mildest touch. In extreme cases, the blisters require daily bandaging, which causes additional pain and distress.
Seamus Graham, from Knocknacarra in Galway, but originally from Killeevan in Monaghan, said explaining his EB to healthcare professionals is often an “exhausting process”.
“I have cardiomyopathy related to EB, and when I’ve had ECG tests before, I’ve had to ask people not to use ECG stickers on my skin or at least to let me take them off myself, but it has not happened,” he said.
“I hope with the card, whoever admits me to hospital can say to everyone involved in my care that I have EB and what that means. I also feel that in the next 10 years or so, we will reach the point where more people know what EB involves. But until then, I’m very happy to have this card in my wallet.”
The idea for the licence-style information card came from Debra’s EB Expert Panel, which raised concerns about how frustrating communicating EB to others can be for those living with it.
“Each card contains information to help medical staff who may have limited knowledge of EB, along with contact details for EB services,” said Deirdre Callis, Head of Family Support at Debra.
“The cards, which are free, are designed to help medical professionals to take the right action during emergencies to help people living with EB to explain their condition more easily.” If you would like to join the dozens of people who have already ordered one, get in touch at: debra.ie.
