Column: I live with the constant pain of ‘Butterfly Skin’
Viktor Gladkov via Shutterstock
“EASILY THE MOST debilitating and devastating condition I have ever seen,” were the stark words of Dr Rosemarie Watson, one of the country’s leading Dermatologists when talking about Epidermolysis Bullosa (EB).
The reality of living with this genetic skin disorders is even starker than those words.
My name is Emma Fogarty, I am 29 and I am the oldest person in Ireland with EB – a genetic skin condition which means my skin is as delicate as a butterfly’s wing.
I was born in Kilkenny without skin on my left foot and right arm and was rushed immediately to Our Lady’s Children’s Hospital, Crumlin.
Like most parents of children with EB, my mother and father knew nothing of the condition and at the time all they were given was scant information and a grave prognosis: I wouldn’t live a week. I would never walk. I would have no quality of life.
Luckily the doctors’ prognosis was wrong. Through the determination of my parents and myself, I went to school, did my Leaving Cert, and moved out of home to go to university… Not bad for a girl who wouldn’t do anything!
These achievements were hard fought though – my constant companion in life is pain so everything I do, every day, needs to be tackled on top of my daily fight against the enemy that is EB. Some days are harder – every second day I need to have a bandage change which means that the 70 percent of my body which is bandaged, needs to be unwrapped to see what’s happened underneath – dressings stick to open wounds, blisters need lancing and draining…you get the picture, it’s grim.
Some doctors equate having EB skin as the equivalent of having third degree burns all over your body. Except in my case, a lot of these wounds haven’t healed. Some never will.
I had to finally succumb to a wheelchair
Over the years my hands and feet have contracted and fused together and four years ago I had to finally succumb to a wheelchair.
Eating is an issue too as EB affects internal skin also – this means my throat is like an hourglass and choking is common. I am now ‘PEG’ fed through a tube directly into my stomach. Other ailments that come along the journey with EB include osteoporosis, anaemia and blisters in my eyes.
It’s laughable in a way – the last time I was in hospital, there were 35 medics in the room – each responsible for a different part of me. Basically the only part not affected is my brain – and thankfully my sense of humour!
DEBRA Ireland’s 25th anniversary
Today I work as the Patient Ambassador for DEBRA Ireland, the charity dedicated to providing care as well as funding into research on how to combat this condition which affects 1 in 18,000 people. The charity celebrates its 25th birthday this year. And there’s a hell of a lot to celebrate!
Twenty-five years ago DEBRA Ireland was set up by a small group of parents who were exhausted and overwhelmed by a big problem and a tiny amount of information. Through their dogged determination to fight for their children, DEBRA helped set up specialised clinics in Our Lady’s Children’s Hospital, Crumlin and St James’s Hospital and DEBRA has a full time Family Support Worker who is on call to all parents and families to steer them through the avalanche that is EB.
DEBRA is a small charity fighting a rare, but horrifically debilitating disease. It doesn’t have the clout in finance or awareness that better known charities have and since the economic downturn DEBRA has had to fight for its own existence, something I can relate to.
I’m here to fight for the next generation
My favourite part of my role in DEBRA Ireland is celebrity stalking! As I said, we’re small so we need people with big voices to shout on our behalf. Over the years, celebs like Colin Farrell, Robert Sheehan, Christy O’Connor Junior, Ray D’Arcy and Keith Cunningham of Today FM have joined to add volume to our voice.
In fact KC from Today FM will host our big 25th Birthday Butterfly Bash next Wednesday 31st in Café en Seine. There will be live music, entertainment, free cocktails on arrival and some fun games and giveaways. Tickets can be bought on debraireland.org/ for €20 as well as details of other ways that could go long way to support the charity.
As I said, EB is my constant companion. It had kicked me down many times but it has also introduced me to amazing people who have fought for me since I was a baby. That’s why I’m here – to fight for the next generation like Claudia Scanlon – because I’m not a girl who wouldn’t do anything!
Finally, like the butterfly, life can fragile and sadly short sometimes, but it can also be beautiful. Please help us release the butterflies next Wednesday!
Thanks for your support.
The Debra Ireland 25th Anniversary Butterfly Bash takes place on July 31st in Café En Seine in Dublin tickets can be bought through debraireland.org/ or in Café En Seine itself. You can follow Debra Ireland on Facebook and on Twitter for more updates.