She’s bald, deaf and blind – but it didn’t stop her from becoming a model Hannah Harpin defied the odds and became a model despite suffering from a rare genetic condition. The 21-year-old from Mirfield, West Yorkshire, is bald, partially blind, deaf and has lost 50 percent of her pigmentation. She was born with a rare condition called Hay-Wells syndrome which causes alopecia, scalp infections, dystrophic nails as well as abnormal development of skin, teeth and eyes. Shortly after birth she lost all her hair and it never grew back. “I have been bullied most of my life, from being sworn at in the street to strangers assuming I have cancer due to my baldness. I’ve even been spat on by a boy, and his friends filmed it. I have had really bad suicidal thoughts for years because of incidents like that. But I feel empowered now as I’m hoping to break down the stigma for disabled models.” Hannah was diagnosed with Hay-Wells syn- drome three years after her birth, though symptoms began shortly after she was born. As she got older, the condition not only impacted her physical appearance but also affected her mentally, as she found herself facing abuse at school and in Public. She used to wear wigs to hide the fact she was bald, but in 2019 she decided to ditch the wigs and embrace her natural looks. Hannah’s hearing has been affected by the condition, and she clearly re- members the difference in getting her first hearing aid at around the age of five. “My first hearing aid was on a metal band worn on my head like a headband, after that they changed it to a soft band until at the age of around eleven or twelve when I got my first BAHA (* a BAHA is a bone-an- chored hearing aid) and finally I could hear clearly. I couldn’t hear properly before that. I couldn’t always understand all that well, but now I can understand better because I can hear a lot more words and Sounds.” Even now she is still hearing new sounds, realising with delight only recently that Coco-Pops really do ‘POP’!
Hannah is also incredibly sensitive to both light and heat, which present some daily challenges. She explains that her eyes can often get uncomfortable and itchy and that they hurt in bright sunlight. The bright lighting needed on photo- shoots can exacerbate this, but she says she ‘pushes through it, because modelling is what I really, really love doing.’ The sunlight also causes her skin to burn, and her body struggles to regulate heat, as a feature of her Hay-Wells syndrome is the inability to sweat. Her confidence has increased as she has grown older. Today she celebrates her uniqueness and encourages dialogue. Her modelling has also added to her confidence. Hannah received counselling when she was a teenager to help deal with the bullying, but looking back at the bullying now she says; “It just makes being a model really, really special. I would like to tell my younger bullied self that I did become a Model”! ‘I was cruelly bullied for my rare condition – now I’m an international model’
Ectodermal dysplasias (ED), are a group of at least 150 inherited disorders that can involve defects in the hair, nails, sweat glands and teeth, and Hay-Wells Syndrome is one of these disorders. Hay-Wells syndrome also known as Ankyloblepharon + ectodermal dysplasia + cleft lip|palate syndrome (AED) is a rare autosomal dominant genetic disorder caused by mutations in the TP63 gene. The ectoderm contributes to the formation of the lens of the eye, parts of the inner ear, the fingers and toes, and nerves, among others, which can cause them to develop abnormally. The symptoms can range from mild to severe, and although there are no cures for ectodermal dysplasias; there are many treatments available to address the different symptoms.
“I would say to the 10-year-old me: Stop worrying about what other people say, because it’s only going to give you wrinkles when you’re older. Then after that, I would say just do whatever you’re doing; you shouldn’t care what other people say because, like, you’re not in this world for other people’s validation. You’re not in this world for them; you’re in this world for you.” As difficult as life was for her when she was younger, Hannah always had dreams of being a model and hoped to break barriers in the beauty industry. “But people said I would never make it,” she says. “I wanted to be a model so I can help the fight against ableism and other forms of discrimination because I believe that everybody should have equal rights and be on the same level,” she says. In 2021 her wish became a reality when she was signed by her first agency Zebedee Talent. Since then, she has modelled in Venice and Amsterdam and earlier this year she made her debut at London Fashion week for Unhidden, an award-winning fashion brand for people with and without disabilities.
Hannah uses social media to share messages of positivity aimed at people with disabilities. “Being on social media has definitely made me into a more confident person,” she says. She hopes to launch a charity that donates wigs to women who can’t afford them and have lost their hair due to medical complications. But most of all she wants to encourage people with disabilities to “love themselves”. “It’s okay to be who you are,” she says. The ones we consider “less privileged” are indeed the more privileged ones.
I hope her story inspires you.
Nwajei Victoria U.
