Melanie Gaydos, Model With Rare Medical Disorder, Takes on the Fashion Industry

Model Melanie Gaydos. Photo: @melaniegaydos/Instagram

Melanie Gaydos was 26 when she got her first set of adult teeth. Up until that point, she’d made due with just three baby teeth and a few back molars. So when she was given the opportunity to have dental surgery earlier this year while appearing on the medical talk show The Doctors, Gaydos jumped at it. “I thought getting teeth would be life-changing,” she said. The surgery went perfectly: Gaydos was given three dental implants and a set of dentures she could take in and out, since her mouth did not have enough bone to support a full set of implants. Gaydos debuted her brand-spanking new, brilliant white smile on The Doctors to a round of applause. But just eight months after that episode aired, Gaydos told me she no longer wears her dentures. Teeth, she’s decided, are overrated. “People are more comfortable when I have teeth in my mouth,” said Gaydos. “But I’m not.”

This is just one of the myriad of ways that Gaydos, now 27, is different than most people. Gaydos was born with a rare genetic disorder called ectodermal dysplasia that affects the dermal layer of skin: pores, teeth, nails, cartilage and even small bones form abnormally. She has a bilateral cleft palate and also suffers from alopecia, which prevents normal hair growth. (“I do grow some hair but I look more like Tommy Pickles from the Rugrats,” she remarked cheerfully.) Her form of alopecia also causes hair follicles to grow inward leading to ingrown hairs, rashes, and because of unchecked eyelash growth that scratched her corneas as a child, partial blindness. She also happens to be an up-and-coming model who’s worked with top-notch photographers, and counts Miley Cyrus as a fan. Or rather, it’s the other way around: Gaydos is an up-and-coming model who just so happens to have ectodermal dysplasia.

“I always had this fascination of being larger than life,” said Gaydos, who once dreamt of being an actor. “I wanted to be on a billboard or on a big movie screen.” But her first love was always fine art: Gaydos began drawing as early as “three or four,” and was always encouraged to nurture that natural talent. Eventually, she wound up in New York City, as a fine art major at Pratt. It was there that she started getting interested in self-portraiture. “I took a lot of self-portraits because, when you’re a student and you’re on a tight schedule, it’s a really easy, fast thing to do,” said Gaydos. But what began as a convenience soon became a passion. “I think it helps other people to see me in a different way rather than if they met me on the street, and what their preconceived notions might be,” explains Gaydos.

Melanie Gaydos poses backstage at the Nina Athanasiou fashion show. Photo: Getty Images

Misconceptions regarding her appearance and medical disorder can run the gamut: “A lot of people think I have cancer, that I’m sick or that I have fatality issues,” she said. “Or, I guess because I look different, people think I’m mentally-challenged or that I’m not as smart as them.” She adds slyly, “Often, in reality, it’s the other way around.”

Gaydos’s intellect is in full effect as she details her ascent within the modeling industry. While exploring self-portraiture, she wondered what it would be like to be shot by someone else. She came away from her first session with a photographer elated, but doubtful her newfound passion would go anywhere. “I used to hate having anyone take my picture, and I was still nervous about modeling for others,” she said. It was a boyfriend—Gaydos had just begun seeing him the time—that got her to see the light. “He encouraged me to try modeling just for the fun of it,” she said. “He helped me to understand that I am the only person who looks like me, that there was potential.”

School was out for the summer and Gaydos decided to make modeling her “summer gig.” She responded to ads on Craigslist calling for “unique people” to shoot. “A lot of them were fashion photographers who’d done a lot of commercial and catalog work and had become bored with shooting stereotypical, look-book models,” she said. Eventually, she set up a Model Mayhem account that also helped to raise her profile. It was around this time Gaydos started to think modeling could one day be a full-time career. She was still in art school, but shooting almost every weekend. “It sort of snowballed from there,” she said, of her career.

One of Gaydos’s assets, and the reason she got to where she is today, is that she takes an active role in every shoot. Her background in fine art and passion for photography means she has strong opinions about the type of work she wants to do—and isn’t afraid to go out and get it. Case in point: After building up a modest portfolio, Gaydos wrote “basically a fan letter” to Eugenio Recuenco, world-renowned Spanish photographer she had admired for years. She included a few photographs of herself. Much to her surprise, Recuenco responded—and offered to fly her out to Berlin to star in a music video he was directing for German heavy metal band Rammstein. The gig, which fortuitously coincided with her graduation, remains a career highlight. “I only work with photographers whose work I enjoy and I think my personal taste has really strengthened my portfolio,” said Gaydos. (This agency is also probably one of the reasons why Gaydos seems so much more fulfilled and happy than most straight-size models I talk to.)

Model Melanie Gaydos. Photo: @melaniegaydos/Instagram

But here’s what really sets Gaydos apart from most women on the planet: Even with all the complications and discomfort her disorder has caused, Gaydos has found a way to accept herself and the world around her. When I ask if she ever feels angry that she happened to be born with this disorder, her response is swift. “No,” she said. “It doesn’t bother me, and it never did. Or if it did, it’s because it was something people were telling me I should be upset about. It’s like, people used to ask me: how do you eat without teeth? Well, people with no legs run marathons. It’s all a matter of perception.”

Gaydos oozes happiness and confidence—and not in that grating, happy-go-lucky Taylor Swift way. This is someone who has been through some things. This is someone who’s had reason to give up and didn’t. She’s not oblivious as to how some people might perceive her (she says negative comments pour in by the minute on Instagram) she just isn’t concerned by them in the least. Interestingly, it’s modeling that’s helped build up her self-esteem. “This year I’ve taken a more active approach in really truly believing in myself and who I am as a person,” she said. “Modeling really inspired all of that. In a strange way it helped confirm and validate my reasons for living.”

“I didn’t start modeling for other people as selfish as that sounds,” she continued. “I was doing it for myself. But what I’ve come to realize is that, in doing it for myself, I’m helping other people become more comfortable with themselves.”

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