Teenager Hunter Steinitz's agony over rare skin condition harlequin ichthyosis

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Hunter Steinitz, 18, has the genetic condition harlequin ichthyosis
It causes her skin to become thickened and dry all over her body
She cannot close her eyes, wears a wig, and is in danger of dehydration
The condition means her skin doesn't contain fatty moisture between the skin cells

Published: 05:29 EST, 23 July 2013 | Updated: 13:04 EST, 24 July 2013

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A teenager has a rare condition that has left her skin so damaged that many people believe she has been involved in a fire.

Hunter Steinitz, 18, has a rare genetic condition, harlequin ichthyosis, which means her skin is too thick and she has dry patches all over the body.

She is unable to close her eyes, wears a wig because her hair follicles are blocked by skin, and is in constant danger of dehydrating because she cannot sweat.

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Hunter Steinitz, 18, has a rare genetic condition, harlequin ichthyosis, which means her skin is too thick and she has dry patches all over the body

The condition also limits Hunter’s movements - the thick skin stops her from flexing her fingers.

In the past, many patients with harlequin ichthyosis did not survive their first year, because they miss vital fats in the skin which protect against bacteria and contaminants.

‘My skin doesn't contain any of the fatty moisture everyone else has between their skin cells, like mortar between bricks in houses,’ said Hunter, from Pittsburgh, in the United States. ‘All I have is the bricks.’

Today, increasing awareness of ways to manage the skin condition is helping people like Hunter live for longer.

With advice from doctors, Hunter begins every day with a long beauty session.

Hunter (pictured with her father, Mark) is unable to close her eyes, wears a wig because her hair follicles are blocked by skin, and is in constant danger of dehydrating because she cannot sweat

The condition also limits Hunter's movements. For example, her thickened skin stops her from flexing her fingers

She takes a long bath - sometimes lasting two hours - soaking as much moisture into her skin as possible.

WHAT IS HARLEQUIN ICHTHYOSIS?

Harlequin ichthyosis is a rare and severe inherited skin condition.

It is caused by a mutation in the ABCA12 gene which is thought to be involved in the transport of fats into the spaces between the skin cells.

About five children are born with it in the UK every year, some of which may be stillborn.

Babies with the condition tend to be born prematurely and are usually small.

The condition causes the skin to be tight, thick and dry.

It can split causing deep cracks and the condition causes the face to look stretched.

There is no cure for it and it cannot be prevented.

Treatment usually involves a careful skin-care regime.

Then she applies a range of lotions and oils, which she gently rubs in to lock in the moisture, reapplying throughout the day.

‘Growing up has been very difficult,’ she said. ‘Gym class was the worst. You're forced to be in physical contact with one another, and people hated me touching them.

‘A lot of the time the teachers wouldn't do anything because they don't know how to react.’

To stop the bullying, Hunter often took the initiative.

‘I would walk around to every single classroom in the building and say: “Hey, listen, I'm Hunter, I have this condition, you can't catch it”.’

While the move earned her some valuable friends, it did little to stop the name calling.

‘That feeling of anxiety would start as soon as I saw the school bus coming around the corner in the morning,’ she said.

‘They would play a game where they took something from someone's desk and dropped it near me.

‘They'd ask me to pick it up for them and the person would refuse to take it back because I'd touched it.’

But her father, Mark, 58, a restaurant worker, and her mother Patti, who died from cancer two years ago, encouraged her to stand up for herself.

In the past, many patients with harlequin ichthyosis did not survive their first year, because they miss vital fats in the skin which protect against bacteria and contaminants

Hunter (pictured left with her father, Mark) is now giving speeches at universities and to schoolchildren to educate people about what it means to live with a serious skin condition

‘Patti would tell her it was her job to educate people,’ said Mark. ‘I would just tell her to live one day at a time, and look forward to the day when people around her were older and would understand.’

Finally, Hunter began to love her body, realising it made her unique and helped her to be stronger.

‘I realised I'd be a totally different person without it,’ she said. ‘My family would be different people.

‘I wouldn't have the same friends - the really special ones who stuck by me through everything.

‘I owe everything about my life to the disorder.’

When Hunter was at school she was bullied because of the skin condition but she says that she has now learnt to love her body because it makes her who she is

Hunter is going to university in September and is becoming a spokeswoman for her disorder.

Working with the FIRST foundation she's started giving motivational talks at universities and to schoolchildren.

She said: ‘One of the hardest things about living with Harlequin is people's reactions.

‘Harlequin gives us such a jarring appearance and people are so shocked, they don't know what to do.

‘We're trying to teach people that they can't catch it, we're not contagious. It's OK to be different, and it's OK for people not to fit the norm.’