EB simplex is often in visible to the outside world

The wounds may be hidden, but the pain is real. Life with EB simplex is a life where blisters and wounds affect the most sensitive parts of your body – the feet (with over 200,000 nerve endings) and hands. Simple tasks, like putting on shoes, become a daily ordeal.

Imagine having a blister on your heel from new shoes. Maybe at a time when you couldn’t easily change them. So, you were forced to go about your day with intense, burning pain. This is what people living with EB simplex face every day. But those raw wounds are all over their feet, not just a spot on their heel.

Many can only walk short distances at a time.

This time we heard from Scarlett, who lives with EB simplex. When Scarlett was born, her mum and dad were confronted with a situation they were not prepared to deal with. Scarlett was missing patches of skin, a sight no parent should ever have to witness. She spent five and a half weeks in hospital, struggling with pain.

As the years passed, Scarlett’s blisters became less prevalent everywhere except her hands and feet. But the scar tissue from the healing wounds affected Scarlett’s feet. Scarlett has had two surgeries on her feet so far to ease her discomfort.

Families living with EB need the specialised care and encouragement from our Family Support Team. They need supplies like therapeutic silver lined socks to reduce scrapes and blisters. And they need the hope for a cure that we offer through our research.

Countless individuals living with EB simplex in Ireland face similar challenges. But in the face of the daily agony and obstacles – Scarlett, and so many others like her in Ireland – are brave and strong. They remain positive, even knowing the increased challenges they’ll surely face in the future. 

You can support our appeal today, and help make sure everyone impacted by EB have our support whenever they need us. Your donation will change lives in Ireland, offering hope, comfort, and a renewed sense of possibility.