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“The hardest part for me has always been people not understanding the pain we go through with EB. When I say I have blisters, people think ‘just get on with and stop whining, we all get them’; but EB blistering affects everything; energy levels are rock bottom and the pain can be unbearable at times.”
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.
“Growing up EBS was hard as myself and my brother were both quite competitive in sports, mainly athletics and soccer. I always remember my parents coating my feet in Vaseline before I ran a race and the same evening they would have to persuade me (normally with a HB feast ice cream) to allow them to burst the blisters I’d just got.”
“People with EB are ok one day but could potentially need a wheelchair two days later, and to some people they think we exaggerate.”
“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!”
Heat and summer temperatures can be extremely challenging for people living with EB. Keeping cool is critical but not easy if you have to wear layers of clothes or bandages. Heat increases the fragility of the skin, which can lead to new blisters.
“My brother, Michael, moved to New Zealand 13 years ago and he suffers badly with the heat and the blistering. He has to wear heavy work boots and every day he could be in pain. He has just recently got in touch with Debra NZ and they have helped him so much over the past couple of months. He is even doing a bungee jump to raise funds.”
”Debra Ireland have been a massive support to me and my family over the years, thank you so much.”
Like many people with EB, Michael had to visit A&E as a result of his blisters and struggled to get the right support as doctors and professionals did not know or understand their condition. Having to explain EB and how it impacts life can be emotionally exhausting, adding to what is an already difficult situation.
Fiona has also fundraised for Debra. She has done the Women’s Mini Marathon even though that meant being covered in blisters for weeks after given the heat. More recently, she did the October push-up challenge where she had to do 1000 push ups in the month. “I was delighted to complete the task and raise much needed funds for Debra.”
“The hardest part for me and still is, people not understanding the pain we go through with EB,” says Fiona.
That is why we are here. We understand EB and we won’t stop until everyone knows and have heard of EB.
We know how difficult this journey can be and that the needs you may have are very particular to you and your situation. We can help in all kinds of everyday ways, to listen to you, support you, and alleviate unimaginable pressures.
If you want to support our work visit debra.ie/donate
