“I want even one parent to see that their child will get through it and life won’t be all downhill”

My name is Katelynn Cogan, but I prefer to go by Kate, I am 18 years old and I am from Mayo. Where I grew up is a very small quaint area.

I was diagnosed with EB at 6 months old and so it was kind of news to the whole village. But it also meant everybody knew about me and my condition.

My hobbies include horse-riding, which I really love. Growing up surrounded by Gaelic footballers in my family, a sport I couldn’t play due to my EB, I fell in love with horse-riding quite quickly as it gave me a community and a sport I could physically and mentally be a part of. I am still a die-heart Mayo football fan and have followed them around the country since before I could talk.

After school, I hope to go to the University of Limerick to do a course in Equine Science. I am currently in my Leaving Cert year and working very hard to get there.

My friends are aware of my EB which has become an easier task of explaining as my friends and I have gotten older and more mature. When I was younger I struggled with telling people as I felt judged and insecure. However it was probably 50% my own head.

One thing I really struggled with was my self-image. I’ve been looking at my scars in mirrors and hating what I see since I’ve been 8 years old. I hated that I was different for so long and that my skin wasn’t perfect. It was a massive mental struggle for me throughout my teenage years and dealing with teenage hormones on top of that was really, really tough.

EB is still a very unheard of condition and I think everybody’s stories should be shared. I think it is important to raise awareness about EB for the future, for the future generations of children with EB and the adolescents currently, and also their parents/guardians. It is a very tough condition to grow up with no matter what form you have, our modern world is so cruel already.

Raising awareness about the less sugar-coated side of EB and seeing that people like me and all the other adults with EB seeing their teenage stories being shared and how they dealt with the struggles of it could really help a lot of people and it could also help people understand what EB is.

It is only in the last year that I have learned to love myself with my condition and not wish it away any chance I get. Growing up I was very religious and used to pray at night that I’d wake up in the morning with it gone. But, recently, someone asked me “if I was given 3 wishes what would they be?”, and my EB not being a part of me anymore didn’t even come into my head. This used to be my only wish. I think it has had such an impact on who I am today in so many good ways, it has made me strong and resilient and not fear the hard times.

I would like to mention my parents who have got me through so much. EB is my condition but they also share the load with me, emotionally and physically. From changing bandages themselves every day, to baths and wanting to take all my pain away, they have been incredible. And now, as I am taking my life into my own hands, I am appreciating them so much. They made my life as easy as they could in every aspect they could because they understood I was already going through so much, they held me through painful wounds and many, many tears and got me out the other side. Essentially I live a normal life and my skin is in really good condition, and a massive part of that is down to them.

In the past I had never wanted to get involved in any of this stuff as I feared the attention it could’ve potentially brought on, but on one of my recent visits to Crumlin for my yearly check-up, I was getting my height measured in a room and I noticed a young couple sitting on the hospital bed in that room with around a 6-month old baby who seemed to have EB on her hands. It looked quite similar to the pictures I’ve been shown of my hands when I was around that age. The fear on her parents faces was enough to get me to want to be involved in any aspect I can be involved in, because that was my parents in that exact same waiting room 18 years ago with the same fear. I want even one parent to see that their child will get through it and life won’t be all downhill.

EB is a condition and I treasure it, it has added so many more things to my life than it has taken away. You have to appreciate the good through the bad times because there is bad times and they are very tough but you get through them and you learn how to cope. As a teenage girl who struggled with self-image as nearly every teenage girl does EB on top of that made it so much worse but I got through it I learned to love my body and my scars and my differences. I love my life and it has taken some hits due to my EB but everything passes. Life is for living with EB or not.

Thank you Kate for sharing your story. It’s only through stories like Kate’s that we can ensure more awareness and compassion for people with EB.

And thank you to you, our supporters, for ensuring we can be there for people living with EB like Kate.

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