“I was born with lamellar ichthyosis,” says Jayza. “This is a rare disease, it affects one in 100,000 people and is inherited due to a chromosomal abnormality. At birth, I was covered in a colloidal membrane that resembled a smooth film. My face and skin felt tight and very shiny. At first the doctors didn’t know what was wrong with me, they put me under a heat lamp and that was it. When I was a few months old, my grandmother found a doctor at Duke University who diagnosed me.”
Jayza admits that she did not immediately realize that there was something wrong with her appearance, that there was something unusual about her. This first occurred to her when she noticed that her parents were very protective of her. When they went outside, everyone stared, and this worried Jayza’s mother very much. She repeated: “Staring is impolite. Ask, but don’t stare.”
On the first day of school, Jayza’s mother came and told the children and teachers why her daughter looked like that. She said: “This is my daughter Jaysa and she has a skin condition. Have any of you ever seen a snake or lizard? Jayza’s skin doesn’t look like theirs, it peels off every 10-12. It’s not contagious. She looks like any of you.”
Jayza’s mother raised not only her daughter’s classmates, but also herself. She never made her feel special.
“If the skin started peeling off my forehead, my mother would just tie a bandana on me. If my brother wore shorts, I wore shorts.”
“My mother has always been my main advocate, and despite the fact that the doctors gave very clear instructions about what I could and could not do, the teachers did not always bother to study them. Although I always had special conditions that I had to insist on. For example, since I don’t sweat, I can’t be outside when it’s hot. I always have Vaseline, an umbrella and water with me. I couldn’t play outdoor games because my skin is like an extra layer that prevents me from releasing heat. In high school, I wore bright makeup—I used makeup as a way to look like others and cover up my imperfections. For example, I drew eyebrows because I don’t have them. I used eye shadow and mascara, lipstick sometimes. I didn’t yet think that not meeting standards was OK and normal.”
Jayza recalls that one day she didn’t wear makeup and literally didn’t recognize herself in the mirror. Then she said to herself: “Stop. My skin is already a work of art. Sometimes it is very bright: almost orange or light brown. Sometimes she’s just exactly as chocolate as I want. I love myself equally and am proud of the way my skin looks.”
In high school, Jaysa was told by her classmates that she should try modeling. She took professional photographs and sent them to several agencies. No one answered.
When Jayza received a response with an invitation to New York, she could not come – a hurricane was raging in North Carolina, where Jayza lived. Jayza was worried that this might be the chance she was missing, but then she decided that if God wanted her to take this chance, the agency would write to her again. And so it happened.
So Jayza went to New York. The agency arranged another photo shoot for her. “I wanted to achieve the best. I wanted to get into Vogue. I wanted everyone who ever laughed at me to see what I had achieved.”
Photo: Instagram (The social network is recognized as extremist and banned in the Russian Federation)