Fiona and her brother both have EB simplex (EBS) which they inherited from their dad. EBS is the most common form of EB both in Ireland and worldwide. But most common does not mean less severe or less painful. "This year I took up hiking with my gym buddies and took great care with my feet before and after, and I managed to walk Croagh Patrick in the heat which is something I never thought I could do!"
As the summer finally comes to an end, we are continuing our call for €810,000 to be invested in mental health support, home nursing care and outreach care for people with EB in Budget 2024 – an investment that would amount to less than 0.003% of the current health budget. With your support, we are continuing to build pressure on the Government to meet with Debra and make this investment.
EB is an incurable genetic condition that affects the body's largest organ; the skin.
People living with EB are missing the essential proteins that bind the skin's layers
together, so any minor friction, movement or trauma causes it to break, tear, and blister.
It is as fragile as a butterfly wing.
That's why we're here. To be a positive force for all those living with EB
and all whose lives have been impacted by EB.
We are here to tell you about EB, to compel everyone to care, and to be a positive force for all those living with EB, caring for someone with EB, or who have been bereaved by EB.
We are here to help in all kinds of everyday ways, to listen, support, empower and alleviate unimaginable pressures. We are here to lobby those in the halls of power. To command attention, demand and drive research and ensure imperative progress is made.
But above all, we are here to bring hope – and not that passive, powerless, resigned kind of hope – but the active, bold hope that moves things on. We are here to prove the power of the butterfly effect – that seemingly small acts and forces can in fact create the most meaningful and monumental change.
Uniting for change for everyone with skin as fragile as a butterfly wing.
We are the largest funder in Ireland of EB research. We drive research into effective treatments and cures for all types EB. Rare diseases, such as EB, often get overlooked when it comes to the development of new treatments. And because of the various forms of EB and its complexity, treatments and a cure are not universal. A cure is likely to look like a combination of treatments.