The day I... braved the catwalk
Ihave spent most of my life being stared at and called names in the street by complete strangers. I was born with the genetic condition Recessive Dystrophic Epidermolysis Bullosa (RDEB) which means a simple knock or bump can cause damage similar to a thirddegree burn. Every day is a battle against painful blisters, which leave scars all over my body.
The areas of my body worst affected are my hands and feet, knees and ankles, elbows and forearms, as well as my throat and gastrointestinal tract.
Since the age of 13 I’ve also had 10 operations to release scar tissue. Despite everything I have had to deal with, my mum, Liz, made sure I lived as normal a life as possible. Thanks to her my childhood was largely unaffected. I had to wear bandages, but I was allowed to play outside, do sport at school and I was never treated differently to my brother and sister, because mum felt that any trauma to my skin was worth it for me to feel like other children my age.
But it wasn’t easy for her – a stranger once accused her of burning me when I was a baby in my pram.
It really wasn’t until my teens that I became more aware of how other people viewed me.
A woman in my local vet surgery told me I looked like I’d been “mauled by a gorilla”, a group of other teenagers at a petrol station said I had “weirdo baby hands” and I was asked if I was contagious.
I was also coming to a greater understanding of the fact I had a terminal condition. That really hit home as friends with the same condition, who I’d met at a residential kids’ camp for people with RDEB, began to die when they were teenagers.
Because of an increased risk of infections like MRSA and skin cancer, the typical life expectancy of sufferers is 18. I’m 20 now so obviously I’ve proved the medical profession wrong – my doctors have even nicknamed me “The Girl Who Lived”.
And I intend to live every second of my life to the full.
In 2017 I started my first year at St Andrews University.
I loved the freedom of being away from my home in Texas and being able to act like a normal student, although I still felt self-conscious meeting new people.
A few months after I started I was asked to take part in a charity fashion show, run by the organisation Label, which promotes body positivity.
I felt incredibly nervous. I’d published some blog posts about my condition online, but walking down a catwalk, with my scarring on display, in front of an audience was a huge deal for me.
But afterwards I felt elated. It made me realise that the best way to raise awareness and combat the ignorance that surrounds RDEB was to be as visible as I could and show that people like me are still beautiful and shouldn’t have to hide away for fear of being judged.
Since then I’ve gone on to forge a successful career as a model alongside studying for a degree in history of art and classics.
I have also taken part in an Instagram photographic project called Behind The Scars, alongside other women with skin conditions, scarring and disfigurements.
In April this year, I gave a Tedx talk to my fellow students about living with a visible disability.
Every day I have to check my body for any open wounds, as they will need dressed, Vitamin E oil applied to keep my scar tissue supple and protect my skin from the sun. I can’t remember the last time I wasn’t in pain, but I don’t take medication because I prefer to keep my head clear for studying.
But I work out every day, I hike, snowboard and socialise with friends – I don’t let my skin’s fragility get in the way of me leading a normal life. I have a boyfriend who sees past my scars, and I hope my modelling work will help other people do the same. My confidence has grown so much. Earlier this year the organisers of The Real Catwalk, which promotes body diversity and inclusivity, asked me to take part in their event in London.
On August 31, I will step out into Trafalgar Square with models of all shapes, sizes, ethnicity, able-bodied and disabled, to take part in a public catwalk show.
I’ll be wearing my favourite red cowboy boots, a swimsuit, and a smile. I know what it feels like to believe that because you’re different, you can’t be beautiful.
I want everyone to be able see my scars because I am so proud of my body and to be part of something that allows me to celebrate it.
As told to Eimear O’hagan
The best way to combat the ignorance is to be as visible as I can be