Kathleena Clancy turned 3 in December. She was born with EB which means certain parts of her body can blister easily and her skin needs to be bandaged. Mum Tina spoke to Thomas Lyons from The Anglo Celt about Kathleena joining their family in 2018.Read More
Last year we held our second family weekend in Barretstown, Co Kildare. Families from all over Ireland and the UK living with EB came together for a fun-filled weekend where they spent time with other families living with the condition.Read More
We spoke to Alana’s mum Rachel Reid, about daughter Alana who was born with EB:
In the days before Alana was due to start pre-school her dad Greg, Caroline (Alana’s care assitant) and I went to meet her new teachers to discuss EB. We also checked the toys, removed anything unsuitable, checked chairs, toilets, outdoor area, etc. I had her new school jumper made into a V-neck so it can be easily put on/off without causing blisters. I covered any seams that could potentially cause any friction. I also dyed t-shirts to match the uniform as she cannot wear the polo shirt and panicked there was lots of panicking.