Beauty queen describes her fight to overcome painful disease that makes her skin crack and shed 

Despite being born with an incredibly rare condition that makes her skin crack and shed, Bailey Pretak is redefining beauty standards.

All her life Bailey, 31, has battled lamellar ichthyosis, a genetic disorder that affects just one in 200,000 people worldwide and has no cure.

Ichthyosis prevents the skin from separating cells at a normal rate, causing a dry and scaly appearance to the outer layer.

As a result Bailey, who lives in Wilcox, Pennsylvania, must exfoliate and moisturize her face, hands and feet on a daily basis, or her skin will peel and leave her in pain.

Growing up, she loved Miss America. When she was 26, her dream finally came true (pictured)

She was born with a rare genetic disorder called lamellar ichthyosis which prevents the skin from separating cells at a normal rate

Bailey was bullied as a child and called names like ‘scaly Bailey’ and ‘the contagious girl’. 

But despite the hardship she faced when growing up, Bailey has reached a point of happiness in her life, winning beauty pageants and leading motivational speeches for those in need. 

‘I look in the mirror and realize that maybe, this skin isn’t what I wanted – but it is who I am,’ Bailey explains.

‘Twenty years ago, if you would have asked me to describe myself, I would have said “ugly”.

‘I might have used “shy”, even “worthless” too. People would call me “scaly Bailey”. I was bullied and always excluded.

‘But now, I realize that I have a story to tell and so I decided to become a motivational speaker.’

As soon as Bailey was born, her skin had a shiny red pigmentation and doctors were quick to identify the problem.

Since then, she has learned the most effective ways to deal with certain side affects, but one thing she still struggles with is the fact that she cannot sweat.

‘I have to take a lot of precautions in the summer time when it’s hot and humid,’ she said.

‘Even something as simple as a fever is life-threatening.

‘If I do have a basic fever, I have to be covered in ice to get my body temperature back down as fast as possible.

‘For me in particular, I guess my skin maintenance has now become part of my everyday life. So I just get on with it. It takes me around 30 to 45 minutes every morning.

‘And before I go to bed, I put ointment in my eyes because my skin is so tight around them, it causes my eye-lids to turn inside out. That’s why they are red.’

She has learned the most effective ways to deal with certain side affects, but one thing she still struggles with is the fact that she cannot sweat

These days, Bailey is a dance teacher for kids in her local community (pictured)

For many years, Bailey also found it hard to deal with high school bullies and the stares she would receive in public. 

‘I remember when I got to kindergarten, parents had called the principal and wanted their children to be removed from my class and warned them to not touch anything that I had,’ she said. 

‘I could overhear people calling me “scaly Bailey”. I just didn’t fit in anywhere, I almost felt like I had to wear a mask to cover up who I really was.

‘Even to this day, I get constant stares and rude comments like ‘did your mother ever teach you about using sunscreen?

When she was in kindergarten, other kids’ parents were afraid she had something infectious

Children would tease her as ‘scaly Bailey’, making her feel worthless and even ugly

‘But either way, I do have the confidence in myself now. It has developed over the course of many years and it wasn’t an overnight transition.’

And the stares were something that Bailey’s mother, Tracie Pretak, also found difficult to ignore.

Tracie said: ‘If we went somewhere together and I saw someone staring, I would automatically jump in front and protect Bailey from them. There were times where it got really nasty.

‘Even if it was a child, I would get right down on their level and stare back at them so they would see what it felt like.

‘But I came to realise that part of Bailey’s insecurity was actually me and my reaction to those rude people, so I decided to change.

‘Now when people stare, I just smile and wave.’

Just a few years ago, Bailey also decided enough was enough and took it upon herself to try and redefine beauty standards and prove all of her bullies wrong.

In 2014, Bailey competed in her first beauty pageant. And despite having no expectations, she won the crown of Miss Pennsylvania Sweet Heart.

‘I remember watching Miss America growing up and wanting to be part of it all,’ Bailey continued.

If Bailey gets too hot, she needs to cover her skin in ice to cool down 

In the last few months, Bailey (pictured with her parents) even managed to return to the high school where she was bullied, to deliver a powerful motivational speech to the current batch of students about overcoming adversity

‘I always felt like I had no place in that world because I wasn’t the typical beauty pageant.

‘But I finally decided you know what, I am tired of letting other people dictate how I should live or what beauty should look like.

‘So I entered and I actually won Miss Pennsylvania Sweet Heart and was invited to compete at the nationals.’

Bailey’s confidence has gone from strength to strength since then, as she now regularly performs as a dancer and has her own class of students.

And in the last few months, Bailey even managed to return to the high school where she was bullied, to deliver a powerful motivational speech to the current batch of students about overcoming adversity.

Bailey has no plans to slow down in her quest to prove so many people wrong.

She said: ‘The media portrays that you have to be a certain size or look a certain way or have flawless skin in the performing arts world.

‘But that’s exactly where my confidence came from.

‘The funny thing is, if you came up to me and told me I’d be a motivational speaker even three years ago, I would have just laughed.

‘And now, if a doctor would call me up and say Bailey, “great news, we’ve found a cure and we want you to be on the front line to take it, do you want to?” I would honestly say no.

‘That would surprise a lot of people, but my skin by no means defines who I am. It’s helped to make me who I am, it has shaped me.’