Emma’s Story – Living with EB

My name is Emma Fogarty and I live in Co Laois with my parents and younger sister. I’m 30 years old and I have Recessive Dystrophic EB. From the minute I was born I had to fight for everything I have today. The doctors told my parents that I would never last the week, that if I did I would have no quality of life and might never even walk.

But here I sit at 30 years of age with so much accomplished. I completed my Leaving Cert, moved out of home at the age of 18 to undertake a course in Limerick for three years. Then when I had that finished I moved to Dublin and worked there for three years. I loved every minute it all and wouldn’t change a thing. And now I’m the Patient Ambassador of DEBRA Ireland, which is a position I treasure!

But trust me, everything I have achieved has come with its own set of obstacles. As proud as I was to be able to move out and be independent, it was one of the hardest things I have ever done. I would never have been able to move out without the assistance of a P.A. who took over the role of my mother 5 days a weeks. She has to help me with the most basic of needs. Most people can just roll out of bed and set off for their day’s work but I was dependant on her to help with dressing, washing, eating and travel and that’s before I even mention my bandages and medication!

But if you want something bad enough you’ll do anything to get it! My doctor has described EB as the most painful, debilitating condition she has ever seen. That is an understatement! If I tried to tell you about the pain I go through on a daily basis, words could never describe the severity. My threshold of pain is much higher because I have known nothing other than being in pain. Morphine is my saviour… when it works! I do dressing changes every second day and can take up to two hours; it is the bane of my life! It is so frustrating to have a wound that just won’t heal even though you are doing everything right. The thought of doing these horrendous dressings for the rest of my life drives me to distraction, but I try to see light at the end of the tunnel.

The light equals DEBRA Ireland. DEBRA Ireland has always been a big part of my life. People ask me why I help them as much as I do and it’s because not only have they been an amazing support to me through the good and bad times but mainly it’s because when I think of the agony and hardship I have gone through over the years it breaks my heart to think that there are six year olds and younger going through the exact same thing. They should never have to endure this.

I have been to so many of DEBRA Ireland’s events in the past and I see the blood, sweat and tears that they put into every event. Research is one of the most important things that DEBRA Ireland funds, the one thing every family dreams about is finding a cure or treatment for this condition. We would never be where we are today if it wasn’t for all the hard work that staff and researchers put in!

What is one of the hardest things about EB? It is to know that you can fight it tooth and nail but there is still a chance that you can develop cancer in your later years. But I know that if or when it does decide to visit me I will fight it with everything I have. And I can guarantee you that I will still be here with DEBRA Ireland in 10 and 20 years time!