Lamellar ichthyosis is a very rare genetic condition that affects 1 in 200,000 people. It results in the shedding and cracking of the skin.
It manifests by stopping the skin from performing cell separation at the normal, healthy rate.
This can cause people with the disease to experience pain, have scaly and dry skin, and need very regular moisturizing and exfoliation in order to prevent further peeling.
Bailey Pretak was born with lamellar ichthyosis, and she has to do all of these things.
As a child, she was a frequent target for bullies and was called a lot of names, ranging from hurtful terms like ‘The Contagious Girl’ to childish and humiliating names like ‘Scaly Bailey’.
This bullying grew so bad that parents had of other students were actually calling in to have their children taken out of Bailey’s class in order to avoid “catching” what she had, and more kids still refused to touch what she had touched.
Tracie, Bailey’s mother, was understandably very protective over her daughter.
She would glare fiercely at those who stared but slowly learned that these actions were hurting Bailey even more.
So, she began reacting with kindness. She smiled and waved at those who looked – and still does that today.
Bailey hasn’t allowed her condition to get in the way of her success and her ability to do inspiring things.
As a matter of fact, she’s decided to become a beauty queen, helping women around the world by completely redefining beauty standards.
Now 31 years old, Bailey has overcome a lot of the hardships she’d faced as she grew up, and her perspective of herself has completely changed.
Bailey admits that 20 years ago if she looked into the mirror, she would describe herself as ugly.
Today, although this may not be the skin she wanted, it’s the skin that she is, and she’s reached a point of happiness in her life.
She has won many beauty pageants – the first being the Miss Pennsylvania Sweet Heart crown in 2014 – and has even led many motivational speeches, inspiring those in need.
She decided to become a motivational speaker when she realized that she had a good story to tell, and her journey speaking to audiences has become a huge part of her life.
Bailey says she’s mostly learned to manage and live with her lamellar ichthyosis, but she does face daily challenges.
As an example, she has to be very careful in the summer, or whenever it’s particularly humid or hot.
If she comes down with a fever, it can be potentially fatal for her, so she has to be completely submerged in ice from head to toe in order to help bring her temperature back down.
If not, it could spell disastrous consequences.
Although these challenges have never been easy for Bailey to overcome, she has, in her words, made peace with the condition that she has.
She’s a lot more confident in herself today, even though it took a long time for her to reach this point and it didn’t happen overnight.
Still, over the course of all these years, she has built confidence and happiness.
