Scaly bailey to beauty queen! Performer mocked for her dry ‘scaly’ skin condition defies bullies by winning beauty pageants
A performer cruelly mocked for her dry ‘scaly’ skin condition is defying bullies by winning beauty pageants.
Bailey Pretak, 30, from Wilcox in Pennsylvania, USA, was born with lamellar ichthyosis – a genetic disorder that means her skin constantly cracks and sheds.
If she doesn’t exfoliate and moisturise her face, hands and feet on a daily basis her skin will crack and leave her in pain.
At school, she was called ‘scaly Bailey‘ and children who feared she was ‘contagious’ stopped playing with the same toys as her.
She was excluded from a lot of activities growing up and only began to ‘come out of her shell’ thanks to acting, singing and dancing.
Bailey started entering beauty pageants two years ago, and has since won the titles of Miss Pennsylvania, Ultimate Queen and Miss Congeniality – an award voted by fellow competitors.
She’s now travelling around the USA using her performances as a platform to educate others about ichthyosis and raise money to help further research for a cure.
Bailey, a bank teller, said: “As a child I felt very excluded and left out, I wasn’t always included as people were afraid of my skin.
“In kindergarten, parents wanted kids moved of out my class or not to touch the toys I played with because they thought I was contagious and there was a stigma similar to leprosy.
“I’ve overheard people calling me ‘scaly Bailey‘ and other kinds of comments like that I’ve been sunburned.
“Because of my experiences growing up, I never thought a person with ichthyosis could be a beauty queen, you get stereotypes in your mind about what one looks like.
“I tried it and in my first year, I was Miss Pennsylvania at Pure International Pageants and a year later I was awarded a title for my volunteering, also I won Miss Congeniality.
“I went from being the shy, insecure girl to being on stage modelling, it’s amazing how far I’ve come.
“The arts are a huge thing for me, they brought me out of my shell, on stage people see the characters I perform, the music I sing or dance to and don’t judge me by my skin.
“I’m using my performances to educate others, the more people who understand the condition, the less they fear it.
“I find it so fulfilling to do, I take the hardships from my own life and see them as a blessing to share with other families.”
Bailey‘s condition affects one in 200,000 and is often diagnosed at birth as children are born with a thin white membrane layer and fluid over their skin – called collodion membrane.
Over the years, to help her combat the dry skin caused by ichthyosis she moisturises frequently and uses sugar scrubs to remove dead cells on her body.
Bailey said: “I shower and lotion my full body once a day to break down the scaling,
“If I forget to lotion one of my arms or the bottom half of my legs, I know I will regret it a few hours into the day when my skin starts to tighten and cracks.
“Summer is easier for me as it’s so humid and my skin looks better, but in winter my hands and feet crack all the time sometimes a quarter of an inch deep.
“Because the skin on my hands and feet crack, it can be especially hard to walk and dance with this condition.
“But I’ve learned to deal with the pain the best I can and work through it.
“I also shed all day long, it looks a little like dandruff and my mom calls it my ‘angel dust'”
While growing up Bailey suffered nasty comments due to strangers’ misconceptions about the appearance of her skin.
Bailey said: “At times, I have felt very alone and like an outcast, but I’ve never given up.
“One of the worst experiences was when I was a child, I was watching whales in the splash zone and these kids behind me were laughing and pointing at me.
“Because we didn’t both speak the same language, it was the hardest thing as I couldn’t explain to them that I wasn’t contagious and that it was a skin disorder.
“Other times I’ve been asked if I didn’t wear sunscreen and was burned, some questions come out very rude.
“You very quickly learn you’re different, especially when it’s so physical you can’t hide your condition.”
Bailey was the only person she knew with the condition until the age of 11, which she found difficult, often feeling isolated and ‘like the only person’ with ichthyosis.
To combat her insecurities Bailey found her confidence through performance classes and now she’s an avid actress.
Empowered by the arts, Bailey is now travelling around the States trying to educate people about ichthyosis and is raising money for the charity FIRST – Foundation for Ichthyosis & Related Skin Types.
Bailey said: “It’s really important to meet other families, as you realise you’re not alone and that there are people who understand what you’re going through.
“I’m going to the hometowns of people with ichthyosis, hosting Q&A panels, sharing stories of being bullied and how I overcame it
“I’m hoping to start travelling to other places, I’m trying to find sponsors or businesses to help enable us to keep going, up until this point I’ve done it entirely out of my own pocket.”
Bailey is looking for sponsorship to continue her tour, if you want to help you can donate at: www.interland3.donorperfect.net/weblink/weblink.aspx?name=first&id=114
Her condition means that she is unable to sweat and to moderate her body temperature she’s reliant upon air-conditioning units.
This presents her with a constant risk of overheating and additionally means that a fever can be life-threatening.
Incidences of moderate to severe ichthyosis – a family of genetic skin disorders characterized by dry, cracked, scaling skin that may be either thickened or very thin – is between 200 and 400 new cases each year.
Dr Anjali Mahto, Consultant Dermatologist & British Skin Foundation spokesperson said: “Lamellar ichthyosis is a genetic disorder that mainly affects the skin.
“Skin cells are produced at a normal rate but not shed normally resulting in scaling of the skin.
“Babies may be born with a collodian membrane and may have problems with temperature regulation, and infection at birth.”