What is epidermolysis bullosa (EB) or “butterfly skin”?

Imagine if your skin was as fragile as a butterfly wing. If it broke, teared and blistered at the slightest touch. If you had skin that took four hours every day to bandage to keep you alive. Or skin that would not allow you to walk without your feet splitting and burning.

This is the skin of someone living with EB, a genetic disorder 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 and blister.

It’s debilitating. Excruciating. Relentless. A disease with no known cure.

Debra Ireland seek to compel everyone to care and inspire everyone to act. They are a positive force for all those living with EB and all those whose lives have been impacted by EB. They aim to help in all kinds of everyday ways, to listen, support, empower and alleviate unimaginable pressures.

Debra Ireland seek to lobby those in the halls of power. To command attention, demand and drive research and ensure imperative progress is made.

But above all, Debra Ireland seek to bring hope.

Debra Ireland aim to prove the power of the butterfly effect – that seemingly small acts and forces can in fact create the most meaningful and monumental change.