Role Modeling for Rare

March 20, 2020

As a fierce advocate for inclusion and someone who refuses to accept “limitation” into her vocabulary, Jeyza Gary does not plan on letting her rare skin condition prevent her from taking over the world. Speaking to Jeyza, she radiates confidence, intelligence, and wit. While learning to “enjoy the little moments,” this model is hoping to empower others to assume her same mentality by sharing her story and spreading awareness. 

“Disadvantages and limitations are not things I’m willing to accept.”

You may have seen Jeyza’s face before, as she was recently featured in Forbes, Glamour, and Vogue magazines. Her modeling career took off unexpectedly when Refinery 29 published an article in September about a woman with a rare skin condition who had taken the modeling world by storm. She reflects on her rise to renown saying, “modeling was something I kind of walked into. One second I’m sitting in class at UNC Charlotte, next thing I know they’re flying me out to L.A.” As a self proclaimed planner, Jeyza is doing her best to take her new lifestyle in stride.

“I guess a lot of my confidence came from understanding that the world didn’t have the power to limit me, but I certainly had the power to limit myself.”

Jeyza was born with lamellar ichthyosi, a rare condition that makes her skin peel like a snake every 10-12 days. She was taught from a young age that having a rare skin disease made her no different from the people around her. “When you first meet me, my condition is very obvious. If you have a physical variance, it is heavy, and very difficult to navigate through mentally. I gained a lot of my confidence through music.” Jeyza remembers how, in her younger years, she leaned on her family and her love of music for support. “I remember having this mindset of: I can’t do anything because I have a rare skin condition. Which turned out to be the farthest thing from the truth.” 

Taking cues from her parents, brother, and grandparents, Jeyza began to understand the importance of normalizing her condition from a young age. After her younger brother began referring to her contrasting skin pigmentations as “sprinkles,” her grandmother began writing a children’s book titled “Jeyza’s Sprinkles.” It was this kind of mentality that encouraged Jeyza to stop “putting limitations on herself” because of her condition. She is now focused on using her modeling platform to normalize diverse representation in media. 

“As the years progress, people need to be educated. I’m the first person to do this, but hopefully, people will see me, and I won’t be the last. I want it to become the norm.”

Jeyza is unlike many models for more reason than one. Despite her recent success, modeling was not Jeyza’s first career choice. Her first passion was music, and she began pursuing her bachelor’s degree in music therapy at a private university after graduating with her associate’s degree in music. However, after only a semester, she was put on vocal rest and forced to withdraw for a year due to an inflamed pharynx. With her plans to become a music therapist on hold, Jeyza decided “I needed a new plan.” 

“I know I’m not a one-trick pony. I want to allow my platform to be more. To speak and advocate for self love, awareness, and advocacy.” 

Making the decision to pivot careers and become a special education and sociology major, it was also around this time Jeyza began to seriously pursue modeling, and almost instantly started gaining traction in the industry. Jeyza contemplates this, saying “modeling was something I kind of walked into. I want to pursue modeling because I like what I do and I’m willing to work at it, unlike singing, which I was just naturally good at.” While working to put herself through college, being a full-time student and continuing to advance her modeling career, Jeyza is focused on not leaving things unfinished. “It gets hard. I question college 25 times a day. I’m constantly on set doing homework between takes. But I’m really working on making school a priority.” She’s excited to work towards her dream of modeling full time once she finishes school, while continuing to advocate for the rare disease community.

What’s Next?

While Jeyza describes the dream as working as a full-time model, she also has big plans for ways she will be able to encourage change in the modeling industry and be a source of inspiration for others like her. Jeyza asserts, “I don’t feel like this condition is the end. There are way worse things. Your life isn’t over. Trust me, there are a lot of things that are the end, but this isn’t one of them.” 

Jeyza also plans on finishing the book her late grandmother began writing for her, inspiring other little girls like her to become “a victor, not a victim.” She will continue to speak out for the rare disease community and advocate for “making your differences work for you.” In short, this million-trick pony has no plans of slowing down her career or advocacy efforts anytime soon.

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