Emma Fogarty from Laois was born with epidermolysis bullosa (EB). Described as the “worst disease you’ve never heard of,” EB is a severe rare genetic skin blistering condition. Children born with EB have extremely fragile skin that blisters at the slightest touch.
Internal organs and bodily systems can also be seriously affected by EB. Currently there is no cure and the only treatment available is constant painful bandaging of skin to prevent infection.
From the moment Emma was born she had to fight for everything she has today. The doctors told her parents that she would never last the week, that if she did she would have no quality of life and might never even walk.
Now aged 31, Emma has accomplished so much more than anyone ever thought possible. She completed her Leaving Cert, moved out of home at the age of 18 to undertake a course in Limerick for three years.
Then when she had that finished she moved to Dublin and worked there for three years. And now she’s the Patient Ambassador of DEBRA Ireland, the only charity dedicated to providing support and services to children and adults living with EB.
Emma won the People of the Year Award in 2010 and was one of the Nissan Generation Next winners last year which saw her learning to drive and being the first woman with her type of EB to pass her driving test.
We spoke to Emma to find out more about the rare condition and her inspiring story.
When were you diagnosed with EB?
I was born with EB. I was born with no skin on my left foot and right arm so they knew immediately that something was wrong. They took biopsies from me and my parents were told a few weeks later that I had EB. I stayed in hospital for three long months until my parents brought me home and adapted to a life of EB.
How has the condition developed over the years?
EB will only get worse as I get older. So as a young child until the age of 8 I didn’t have dressings, mainly because Ireland didn’t have them, but now I couldn’t live without any dressings as I have open wounds all over my body. Wounds then get bigger as I get older and pain gets harder to manage.
How does having EB affect your day-to-day life?
EB affects every aspect of my life. I wake up every morning and take ten different medications after being disconnected from an overnight feeding system. I can’t eat as my throat has narrowed over the years. EB is also internal. After the medication I set into a three hour dressing change every second day. I take huge amounts of morphine just to get through the change. It also affects little things like turning over in bed as I could easily tear the skin or cause blisters by that simple movement. I can’t open a can of Coke or tie a button on a shirt, sometimes even turning on a light switch can hurt.
What’s the most challenging thing about living with EB?
Pain is a huge factor of EB. It can be hard to get through the day sometimes. I am in constant pain, every minute of every day and nothing seems to take it away. I am on huge doses of morphine but it only takes the edge off the pain, it never takes it away completely. Fear is another challenge. Every day I live in fear of what might come. Cancer is a big thing in EB. Because I have open wounds all over, it is very easy for cancer to grow.
What are the current treatments available in Ireland?
There is lots of research going on in Ireland and across the world for EB, but there is no treatment as yet. The only thing we can do is try to maintain the condition and do the dressings using all sorts of different creams, ointments and medicines.
What drives you to stay so positive?
I believe life is for living so get out there and do your best and enjoy it. Life isn’t for sitting in a corner and dwelling on your problems so get out there and fight them. It is also the children that have EB that keep me positive. I want them to see that you can have a life and go to college and get a job and drive a car if you want. They push me to be better.
What’s your advice for other people suffering with EB?
I would tell people who have EB to fight, don’t let it beat you. Do all the things you want to do.
How has DEBRA Ireland helped you?
DEBRA Ireland provides research into finding a cure, which is what every family dreams of. That is all we have ever wanted, something to cure this awful condition or even to have something to ease the pain that little bit. They also provide patients with a Patient Support Worker who goes out and helps the families get through the tough times. They have also been a huge support to me, visiting me in hospital and being there for me. I know that if I ever needed them for anything they would be there for me.
The first ever DEBRA Ireland Fire Walk takes place on 1st October. To find out more about the Fire Walk, and to sign up click here. DEBRA Ireland is the national charity to provide patient support services and to drive research into treatments and cures for those living with the genetic skin condition, epidermolysis bullosa (EB). EB Awareness Day takes place on 23rd October. Text BUTTERFLY to 50300 to donate €4.
