This Model Just Opened Up About a Rare Condition That Causes Her Skin to Shed Every 2 Weeks
Being comfortable in your own skin can be tricky regardless of what you look like. But it can be even more difficult if you didn’t grow up seeing people who look like you represented in modeling campaigns, in the media, or even on the street.
That’s what led Jeyza Gary to become a model, according to an as-told-to Refinery29 essay she was recently featured in. In the essay, Gary speaks about her experience with a skin condition called lamellar ichthyosis. Lamellar ichthyosis is rare, affecting approximately one in every 100,000 people in the United States, per the National Institutes of Health (NIH).
Lamellar ichthyosis can be caused by mutations in one of many genes, responsible for providing instructions for making proteins that are found in the outermost layer of the skin, or the epidermis. Most often, lamellar ichthyosis is caused by a mutation of the TGM1 gene, which serves to help form a barrier between the body and the environment around it.
Since the condition essentially hinders the healthy formation of the epidermis, it can affect a person’s ability to regulate their body temperature, among other things, per the NIH. It can also make affected individuals more susceptible to infections and make it difficult for them to retain water, which can lead to dehydration.
Babies born with lamellar ichthyosis are usually covered in what’s called a collodion membrane, which is a clear, tight sheath covering the skin. This membrane will likely dry and peel off throughout the baby’s first few weeks. Gary even described what she looked like 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."
People with lamellar ichthyosis usually have big, dark, plate-like scales that cover their skin on the majority of their body. Some people with the condition also lose their hair and have abnormally formed toenails and fingernails. Additionally, Gary said that lamellar ichthyosis causes her skin to shed every 10 to 12 days.
Gary said that she was inspired to pursue modeling after a classmate mentioned to her that she should model during her senior year of high school. "It encouraged me so much. I took some headshots, and I submitted them to agencies before I went to college," she recalled.
Her visibility, in turn, encouraged other people with lamellar ichthyosis. According to Refinery29, one such person reached out to her on Instagram and 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.”
Because of interactions like this, Gary said that her modeling career isn’t about her. Rather, it’s about increasing visibility of people whom the modeling industry has kept out for too many years. “It’s about allowing other people to see me and be encouraged…I want to be the best…I want to be that for other people who don’t see it in themselves,” Gary said.
Gary is currently represented by We Speak, a modeling agency that represents "health conscious" models.
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