14/08/2014 12:52 BST | Updated 22/05/2015 06:12 BST

Courage Of Teen Whose Skin Condition Makes Her Look Like A Burns' Victim

Courage of teen whose skin condition makes her look like a burns' victim

Teenager Hunter Steinitz's attitude makes other girls' obsessions with their looks seem rather petty, to say the least.

For while many teen girls get hung up about the odd spot or blemish, 18-year-old Hunter's skin is so damaged that many people think she has been burnt in a fire.

In fact, Hunter, from Pittsburgh, US, has a rare genetic condition called 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. The condition also limits Hunter's movements - the thick skin stops her from flexing her fingers.

But rather than complain about her appearance, let alone the extreme pain she endures, Hunter says she's grateful. For despite being taunted by bullies, she says she feels blessed because if it wasn't for her condition, then she wouldn't be the amazing young woman she is.

She said: "I realised I'd be a totally different person without it. 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."

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

"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.

Now 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."