Our skin has three main functions, one of which is protection. For Dan Townley, and his newborn son Ezra, their skin fails to do what most of us take for granted.
Dan and Ezra both have EB, which stands for epidermolysis bullosa. EB is a condition which means they are missing a layer of skin. It can cause blisters and sores in areas that get friction such as hands, feet and legs. The EB awareness week runs from 25-31 October.
In severe cases, as displayed in the film The Butterfly Child, some suffers have to bandage their entire body in order to just wear clothes. It is often described as butterfly skin, as those with the condition are said to have skin as fragile as a butterfly’s wings.
In it’s most severe forms, EB can be fatal, but even in its milder forms it causes lifelong pain and disability.
Dan Townley, 26, from Tunstall, has simplex EB, and described what it was like to live with the condition.
“I was diagnosed from birth. My father had EB, too and there is a 50% chance it will be passed down to your children. As soon as I came into the world I had no skin on my hands, feet, arms or the backs of my legs.”
Growing up, Dan lived with his mum, who had to learn how to properly treat Dan’s condition without any prior knowledge. This included how to properly pop blisters, how to wrap bandages and administer pain relief.
“For me it’s completely normal having this skin condition but I understand that from people on the outside looking in, it’s completely the opposite of natural” Dan laughed. “You have to bath almost every day and take medicated baths. You have the pop blisters which you get told not to do if you don’t have EB. You’re going against everything that medically ‘normal’ people would do”
In school, Dan was bullied for his condition. “It’s the mental aspect rather than the physical pain that gets you down. For me this is completely normal. Why can nobody else accept it? So that was the hardest thing to kind of get my head around.”
Determined Dan never let his EB from preventing him from joining in with activities, though. “I wasn’t supposed to play rugby or any contact sports, but if I got told I couldn’t do something I would go and do it. If it hurt I just had to deal with it. It’s all about knowing your own boundaries and when to stop.”
On October 15, Dan and his partner Kirsty Lawton, 22, welcomed their little boy Ezra into the world. He was diagnosed straight away with EB, just like his dad.
Kirsty said, “I kind of knew that Ezra might have had EB anyway, since there is a 50/50 chance it will be genetically passed on. When Dan and I got together, we spoke about having kids and knew the odds so it didn’t really bother me. We did get offered to have tests done before he was born but we turned it down. He copes with it really, really well.”
Part of Ezra’s daily care is more demanding than your average nappy changes and feeds. Things as small as how you hold a baby with EB are different than children living without it. “When getting wind up, people say you should rub, but we have to pat. Everything is testing his skin – he’s only nine days old so his skin is still very new,” said Dan. “We haven’t had to turn any clothes inside out yet. That is something kids with EB get told to do to reduce rubbing.”
“I hope he can kind of look up to me,” Dan said, as he spoke of Ezra growing up. “I always live in spite of EB – I don’t let it define my life. I’m not ‘Dan with EB’, I’m Dan who happens to have a skin condition.
“It’s never been EB and me. It’s always been me living my life and sometimes I get blisters but I deal with it. I want Ezra to do that, too and I want him to do everything that he dreams of. I want him to think ‘Yeah, my Dad’s done that so I can do it as well.’”
DEBRA is the only national charity supporting people suffering from EB and this year celebrates its 40th anniversary.
The charity was founded in 1978 by Phyllis Hilton, whose daughter Debra was diagnosed with EB. The doctors advised Phyllis to take her home and look after her until she died. Instead, they went home and Phyllis founded the charity DEBRA to offer support for others suffering with EB.
During the past 40 years, care, support and research into the condition have progressed immensely. DEBRA stated that “over 30 of the genes that cause EB have been identified, and potential treatments for the condition are entering human clinical trial stages for the first time.”
DEBRA have been selected for the BBC Radio 4 charity appeal on Sunday, 4 November. The work they do will be highlighted by the BBC in a three minute programme and give listeners the opportunity to learn more and offer donations.
Veteran broadcaster Steve Rider will be hosting the appeal. He said.
“I’m delighted to be giving the BBC Radio 4 Appeal on behalf of DEBRA. Meeting people with EB has made me realise how the condition can take over every part of life. EB makes huge demands on the individual and the family affected, but those can be counteracted with the practical and emotional support DEBRA provides, and the research DEBRA funds. It’s a charity that has a very positive effect on every level. You can see the benefits it generates.”
For their 40th anniversary, the charity are encouraging the public to host a tea party, and ‘Drink Tea, FightEB. The charity said, ‘All money raised through the Tea Party will help #FightEB. Donations could fund further research into the condition or help provide much-needed care and support to people suffering from the condition and their families.”
Jack Schofield, Fundraising Supporter Care Manager at DEBRA said: “We hope that the local community will join us to celebrate DEBRA’s 40thAnniversary. Thanks to public support, we’ve made fantastic progress in the last 40 years, but there’s a lot to do. With your help we can continue to fund research into effective treatments and provide care and support to people suffering from EB until we find a cure.”
To order your Drink Tea, #FightEB Tea Party pack please contact [email protected] or call 01344 771961.
To hear more about Dan and Ezra’s story, see our video below: