28-Year-Old Model With A Rare Genetic Disorder Breaks All Fashion Stereotypes

Many of us are quite happy with the diversity we see in the world around us. It doesn’t matter if it is the language, the culture or even the appearance, it is something that makes life interesting. We recognize, however, that some industries don’t embrace diversity quickly, and that is the case with the fashion industry.

It appears as if that industry may be turning a corner, thanks to a Seattle-based model, Melanie Gaydos. She is a 28-year-old fashion model who was born with a genetic condition, ectodermal dysplasia.

Ectodermal dysplasia begins in the womb when the embryo is affected. The genetic condition affects the outer tissue layers that make up the hair, skin, teeth, nails and sweat glands. The National Foundation for Ectodermal Dysplasia says that less than 200,000 people in the US will have a problem with this condition. Melanie is also suffering from alopecia, and she is partially blind due to her eyelashes scratching her eyes as a child.

Because of Melanie’s condition, she was born with a cleft palate and bilateral cleft lip. She also has issues with her nails, hair, teeth, and pores. When she was a child, she had to undergo some 40 surgeries to correct her mouth, ears, and eyes.

Many people would have difficulty dealing with so many surgeries but Melanie found a way to cope. She said, “I definitely found a way of coping with [ectodermal dysplasia] just in how I perceive and accept my body, how it looks and how it functions.”

Melanie may be able to deal with the situation but people still treat her as if she is seriously ill and sometimes, even contagious. When she was 26 years old, she received her first set of dentures as well as three dental implants. It was during her appearance on the show, The Doctors. Within eight months, she removed the dentures and never wore them again. She said: “I also found I was more comfortable with myself how I am, without any enhancements. Maybe other people think I am incomplete, but that is only because they have teeth or know what that is like and cannot understand or picture what it’s like without any. I don’t miss having teeth because I never really had them to begin with.”

Dr. Latanya Benjamin was also contacted about the condition. As the medical director of pediatric dermatology at Joe DiMaggio’s Children’s Hospital in Hollywood, Florida, Dr. Benjamin knows a thing or two about this condition. The condition can cause overheating in hot temperatures so it is necessary to seek out air, extra shade, and water. When Melanie was a kid, she said that she felt she was never drinking enough water. She is now able to manage different climates as an adult.

Melanie also talks about her modeling career. It was never a path she had considered due to her health condition but when she was studying at the Pratt Institute in New York, she became the subject of a photograph. When she emailed a photographer, she was invited to take some photos with him.

Now that she has changed career paths, Melanie says that she wants to break into high-fashion modeling. She is also in a photo shoot for i-D magazine’s summer issue if you are interested in seeing more.

Melanie also discusses her desire for change and although the fashion industry may be more inclusive than it was at one time, it is still moving slowly. She says: “There are simply not enough ‘different’ people fighting to be in whatever spot or position.”

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