Each month we shine a spotlight on a different family-centred Irish charity as part of our Charity of the Year series. For October, we’re showcasing the great work of DEBRA Ireland. Read on to find out more.
What is Epidermolysis Bullosa?
If you’ve never heard of Epidermolysis bullosa (EB), you can count yourself among the lucky ones.
EB is a a distressing and painful genetic skin condition that causes the skin layers and internal body linings to separate. This causes a breakdown in the natural proteins that hold the skin together, meaning that the slightest touch can cause severe pain, blistering and sores.
A rare genetic disease, an estimated 1 in 18,000 babies born in Ireland are affected by EB. Over 500,000 people have EB worldwide. EB has been described by a Consultant Dermatologist in Our Lady’s Children’s Hospital as “easily the most debilitating and devastating disease I have ever seen.”
Most devastatingly, EB is currently incurable.
What is DEBRA Ireland?
DEBRA Ireland is a national Irish charity, established to provide support services to patients and families living with EB. It also drives research into treatments and cures for those living with the condition.
Established in 1988 by the patients and families of those living with EB, the charity’s focus has never changed since then and is reflected by the fact that patient family representatives continue to sit on its Board and their opinions inform decisions made both in terms of how funds are raised and spent.
DEBRA Ireland provides hope and support to those living with EB. There are currently 300 people living in Ireland living with the condition. DEBRA Ireland provides support not only to them but to their families who regularly act as carers.
How You Can Support DEBRA Ireland’s Mission
DEBRA Ireland gratefully accept donations and they also run a volunteer programme for those seeking to donate their time. You can also partake in one of DEBRA Ireland’s many events or even organise your own event. Your help allows DEBRA Ireland to give much needed support to families and provide funding for the research programmes that currently give families hope, and one day with your help, hopefully a cure.
The image above outlines how DEBRA Ireland allocates the funds raised from charitable donations.
More Information About DEBRA Ireland
About the Author: Robyn Hamilton
