I Never Saw Models With My Skin Condition, So I Became One

Photo: Courtesy of Sophie Kietzmann.
Model Jeyza Gary has a rare, inherited condition that causes her skin to shed every two weeks. Two years ago, she decided to pursue a modeling career while completing her bachelor's degree in special education. Now, she's signed to a modeling agency, and has been featured in Vogue Italia. The following interview has been edited for length and clarity.
I was born with a skin condition called lamellar ichthyosis. It’s rare, only affects about one in 100,000 people, and stems from my parents having an abnormal chromosome. At birth, I had a collodion membrane that kind of looked like slick Saran wrap. My face and skin were very tight, and I was super shiny. They didn’t know what was wrong with me at first, so I stayed in the hospital for weeks under a heat lamp in the NICU. When I was a few months old, my grandma took me to her family doctor who referred me to someone at Duke University who finally diagnosed me.
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A Mother's Strength
I first realized I was different when I was old enough to see how my family was very protective over me. We’d go out and people would stare. I remember it bothering my mom. She would say, “It’s not polite to stare. Feel free to ask, but don’t stare.” Sometimes she told the parents, too, because the children only do what they learn from their parents.
On the first day of school, my mom would come in her slacks and brown lip liner to educate the children and the teachers about my skin. She would make me stand beside her in the front of the class with my two Afro puffs and then she would say, “This is my daughter, Jeyza, and she has a skin condition. How many of you have seen a lizard or a snake? Jeyza’s skin is like that. Every 10 to 12 days, it sheds. It’s not contagious. She is just like everyone else.”
She was teaching them, but in a way, she was teaching me, too. Hearing that recited over and over again at the beginning of school year reaffirmed that I was just like everyone else. My mom never made me feel like I was separate. If I was peeling on my forehead, she would tie a bandana on my head and I would go to school. If my brother wore shorts, I wore shorts.

My skin is art. I take pride in being two different shades of brown at the same time. I’m giving you a double dose of melanin.

Jeyza Gary
My mom was my biggest advocate before I knew how to advocate for myself. Although I had extensive doctor’s notes that explained my situation, the teachers wouldn’t care to read them. There were certain accommodations that I would have to ask for. I don’t sweat, so I can’t be outside when it’s too hot. I needed to have an umbrella, water, and Vaseline or Aquaphor on me at all times. Growing up, I didn’t go outside and play a lot because my skin is like an extra layer and it constricts me and keeps me from releasing heat.
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When I was in high school, I definitely wore a lot of makeup. I used it as a way to fit in and cover the things that made me stand out. I would fill in my eyebrows because I don’t have any. I’d wear eyeshadow and mascara and something on my lips. I didn’t know it was OK not to completely fit in.
One day I didn’t wear anything, and I was like, “Who is this person?” I started feeling like I needed makeup, so I stopped. My skin is art enough. There are moments when my skin is super bright and orange and light brown. Then there are moments when I’m just as chocolate as I want to be. I love them both equally. I take pride in my skin. I take pride in being two different shades of brown at the same time. I’m giving you a double dose of melanin.
Model Behavior
My senior year in high school, a classmate wrote in my senior yearbook: “Dear Jeyza, I am going to miss you so much. You always find a way to make a smile. I wish the best for you truly…P.S. You need to model.” It encouraged me so much. I took some headshots, and I submitted them to agencies before I went to college. I remember calling a particular agency and checking in. Their words were, "If you haven’t heard anything back, that’s your answer."
Finally, I got an email last September from We Speak Model Management inviting me to come to New York, but I had no way to go because we were in the middle of a huge hurricane in North Carolina. I was distraught at first. I thought, "This is my chance." But then I centered myself and said, "If this is what God wants for you, it could be today or 10 years from now, so keep doing what you are going to do." Then, I got a DM from the agency again in April, and I was signed by early May. Everything was aligning.
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On my first trip to New York, I did a few shots for my portfolio and went on a couple of go-sees. I walked into my first casting with a yellow shirt, overall bell-bottoms, and high-top sneakers, and I did feel a little different. There were people that looked like they were models for agencies, but at the end of the day, I am too. I have to focus on positive self-talk. I don’t have to compare myself to anyone else.
Photo: Courtesy of Sophie Kietzmann.
After the trip, I posted one of the pictures to my Instagram, and one woman reached out in my DMs. She said, "Your pictures give me goosebumps. I have lamellar ichthyosis, but I don’t have the courage to wear shorts. You give me the courage to do something I've never done." It’s not about me. It’s about allowing other people to see me and be encouraged.
I want to be the best. I want to be in Vogue. I want to be sought out by everybody that turned me down. There was never a person I could idolize growing up. It was my family instilling in me that I am good enough and there is nothing wrong with me. I want to be that for other people who don’t see it in themselves.
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