Until the age of 18 months old I was just like any other kid, with baby soft skin and bright eyes. But when I started crawling, huge blisters popped up all over my body from the friction of the floor on my skin.
My parents, both nurses, took me to the doctor right away, and after many tests I was diagnosed with a rare genetic skin condition called Epidermolysis Bullosa (EB), which affects only half a million people worldwide.
Put simply, my skin lacks the protein that binds the layers together, and it blisters and tears at the slightest touch. You can imagine how tough this was as a child – I wanted to run about and climb trees, but in order to do the ordinary things that kids do, I had to wear thick padding all over my arms and legs.
For the most part the other kids were pretty accepting when I was little – it was as a teenager that life became challenging. Girls often struggle with self-esteem at that age anyway, but I was sure that no one would ever find me attractive because of my skin. I picked clothes that covered me up and I’d hide in the loo to change for PE.
I remember being in a class once, chatting away with my scarred and blistered hands on display. A boy came wandering over, took one look at me and said, ‘Urgh, look at her hands!’ I was mortified and rushed home in floods of tears. That day stuck with me for years.
Managing my skin
My daily routine has always been focused around my skin, which requires a lot of care. Every morning, I remove my bandages and run a bath with sea salt and baby bottle steriliser in it. I soak for about 20 minutes, then I shower with a special soap, dry myself carefully, and set up everything I need for the next, time-consuming stage.
With a small needle, I drain the blood blisters on my legs, before applying an antiseptic gel to any open wounds. Next, I apply cream to the patches of healthy skin, before bandaging up my entire legs and sticking large plasters over my bum and lower back. Because my legs are so long, I need lots of rolls of bandages.
EB affects me internally too. I have a narrowing of my oesophagus so I’m prone to choking on food and I get blisters in my throat.
Every four years I have an operation to widen my oesophagus – I’ve had it done three times, under general aesthetic. People with my condition also have a considerable chance of developing skin cancer by 35, and this is something I’m coming to terms with.
My model life
Because I’ve always been tall – I’m 5ft 11 – and skinny, I was often scouted by modelling agencies, but as a young teen I brushed their offers aside: there was no way I was confident enough to display my skin. After all, if I was too embarrassed to even tell my friends about my condition, how could I show my flesh on a catwalk or for a camera?
But at 17, I was tired of secrets and started to tell my friends about my EB. It was such a relief when I opened up – they were so understanding and were interested, because for years they’d never wanted to ask about my skin but they knew I didn’t want to talk.
Telling my friends felt like a weight lifted from my shoulders, and gave me the confidence boost I needed to try my hand at modelling. My first shoot was terrifying, but now I enjoy it – I’ve done campaign shoots with prestigious photographers and big brands like Misguided. In the early days, I’d make a feature of my skin in shoots, but I’m trying to stay away from that now because I want the message to be that your skin doesn’t define you as a person.
I won’t work with people who aren’t accepting, but I have had the odd bad experience. I always take my own tights with me, and at one show the stylist told me to take them off. I’d shown my skin to the person who booked me and he said it was no problem, but this stylist waited until I’d got my tights just below my knees and said, ‘Actually no, put them back on.’ It was a bit hurtful at the time but I didn’t let it discourage me.
I try my hardest not to let my skin impact how I live my life. I still go to concerts, though I’ve learnt to stay at the back of the crowd after losing a lot of the skin from my legs in a mosh pit once.
I live in North London with my parents, and I regularly hop on the Tube to get around. Working full time is difficult at the moment, though one day I’d like to go to university and get work for a charity. I’ll carry on with modelling too – I think it’s important for people to see someone with skin like mine – I wish that when I was a kid there had been girls to look up to who were a bit different.
I try to be chilled out. I’ve learnt not to let things bother me as much, as it can be very overwhelming and take over. EB has shaped who I am: it’s made me a stronger person, a more understanding person. But of course a chronic condition like EB does have an impact on my mental health.
For years, I battled depression and feelings of unhappiness. Every time I blew out my birthday candles, every time I picked a dandelion and blew the seeds away, my one and only wish was to be free of this condition.
But during the last few years, I’ve realised that if I don’t accept myself for the way that I am, or I spend too much time hating things I cannot change, I’ll never be happy. I’ve realised that by modelling I can raise awareness about genetic conditions, and help raise money for life-saving treatments. I’m working with Jeans For Genes Day to do just that.
My advice to anyone struggling with certain aspects of their appearance is not to hide. Own your ‘imperfections’. Be confident. Give humans some credit and trust that they will see you for the incredible person you are. It’s not an easy road learning to accept yourself, but it’s worth it.
Jeans for Genes Day
● There are 500,000 children in the UK living with genetic conditions.
● Although genetic disorders are rare, they are the biggest killer of children under 14.
● Jeans For Genes Day was established in 1994 to fund research that helps find cures and treatments for childhood genetic diseases, cancer, and epilepsy. So far it’s raised more than £35 million.
● This year Jeans For Genes Day is on Friday 21st September. Wear jeans to work and donate £2, or organise a bake sale or pub quiz.
For more information, visit Jeansforgenesday.org
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