Woman become a model despite suffering from a rare condition

Woman become a model despite suffering from a rare condition

04/06/2021

Teenager who is deaf and bald fulfils her dream of signing with a modelling agency after overcoming suicidal thoughts triggered by years of being ‘spat at’ and taunted because of her appearance

  • Hannah Harpin from Mirfield, West Yorkshire, was born with Haywell Syndrome
  • The 18-year-old who has been bullied most of her life, has had suicidal thoughts
  • Now fighting against discrimination as a model signed to Zebedee Management

A teenager who is deaf and bald has fulfilled her childhood dream of being signed to a modelling agency after overcoming years of bullying because of her appearance. 

Hannah Harpin, 18, from Mirfield, West Yorkshire, was born with Hay-Wells Syndrome, a rare condition which affects just 30 people worldwide and leads to the abnormal development of the skin, hair, nails, teeth and eyes.

‘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,’ Hannah said. 

‘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 Harpin, 18, (pictured) from Mirfield, West Yorkshire, who was born with Haywell Syndrome, has signed with a UK modelling agency

Hannah (pictured) said strangers have sworn at her in the streets and some assume that she has cancer because she is bald 

Hannah (pictured) revealed the years of bullying led her to battle suicidal thoughts, however she’s now hoping to break the stigma for disabled models

Hannah is now hoping to fight against discrimination after signing with a UK modelling agency.

‘It means the world to me to start off on my modelling career, getting to connect with lots of people and help people who are just like me,’ Hannah said.

Hannah is the only person in her family with the genetic condition, also known as ectodermal dysplasia.

Despite the challenges she faces, Hannah has always dreamed of becoming a supermodel and breaking the stereotypes of the industry.

She said: ‘When I was young I wanted to be a model but people said I would never make it.

‘I want 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.

Hannah (pictured) who is the only member of her family to have the genetic condition, said she has been bullied for most of her life 

Hannah (pictured) said she has wanted to be a model from a young age, however people told her she couldn’t make it 

‘If we all teamed with each other I believe we could lower the rates of discrimination and my whole modelling career is going to be working towards this.’

Hannah has signed with Zebedee Management, a modelling agency that specialises in supplying diverse models and is passionate about redefining the perception of beauty and disability.

Although she expects to be met with barriers, Hannah hopes to one day travel the world as a model and walk in a Burberry fashion runway.

She said: ‘It would mean so much to me to achieve this and I’ve made a promise to myself that I will help people and make a legacy for myself.’

Hannah (pictured) said wearing wigs has helped her career, however she has found empowerment from embracing being bald

Hannah revealed wearing wigs has helped her confidence in modelling, although she also embraces her naturally bald look.

She said: ‘I love my wigs, the long ones especially, and reviewing wigs for people with medical hair loss.

‘I just wish that human hair wigs would cost less for people with medical hair loss.

‘I remember crying because I didn’t have any hair as a child and I was jealous of other children but now I embrace the fact that I’m bald, it’s really empowering.’

Hannah (pictured) revealed she plans to open her own charity to help women with medial hair loss access wigs

Hannah has already helped other women with medical hair loss by donating wigs to people who can’t afford them and she plans to open her own charity to continue this in the future.

Hoping to inspire others to overcome hardship, Hannah said: ‘It’s okay to be who you are, hate makes the heart older and being kind makes the heart grow fonder.

‘If you see any type of discrimination set that person aside and educate them instead of growing more hate.

‘Spread love not hate and love yourself.’ 

WHAT IS ECTODERMAL DYSPLASIA? 

Ectodermal dysplasias (ED) are a group of 150 inherited disorders that involve defects in the hair, nails, sweat glands and teeth. 

When a person has at least two types of abnormal ectodermal features – for example, malformed teeth and extremely sparse hair -the individual is identified as being affected by ectodermal dysplasia.

All ectodermal dysplasias are heritable or genetic disorders, which means that they can be inherited or passed on to children. 

However, it is possible for a child to be the first person in his or her family to be affected by an ectodermal dysplasia. 

In that case, the condition likely has been caused by a change in the DNA or a genetic mutation.

The faulty gene affects the development of the ectoderm, one of the three primary germ layers in the very early embryo.

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. Therefore, ectodermal dysplasia may cause these parts of the body to develop abnormally.

Symptoms range from mild to severe. Only in rare cases does ectodermal dysplasia affect lifespan and very few types involve learning difficulties.

There are no cures for ectodermal dysplasias, but many treatments are available to address the symptoms. 

Source: National Foundation for Ectodermal Dysplasias

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