Teenager suffers rare skin condition preventing her from closing her eyes or grow hair

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.

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 bodyHunter 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 sweatHunter (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 fingersThe 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 contaminantsIn 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 and Mark SteinitzHunter Steinitz

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 isWhen 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.’

Read more: DailyMail

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