• Model Melanie Gaydos has found enormous success in the fashion industry. (Melanie Gaydos / Facebook.)
Melanie Gaydos, 28, has ectodermal dysplasia - a group of rare genetic conditions - and is using her success as a professional fashion model to educate people and smash through conventional beauty standards.
By
Chloe Sargeant

16 Jun 2017 - 9:51 AM  UPDATED 16 Jun 2017 - 10:05 AM

Melanie Gaydos is 28 years old, and has found widespread success as international model. She's starred in multiple fashion campaigns and been shot by some of the world's most highly-renowned photographers.

The highly-recognised model and social media phenomenon has a rare genetic condition called ectodermal dysplasia, which means the growth of her hair, nails, teeth, skin, and glands are interrupted. 

The condition is incredibly rare; less than 200,000 people are recorded as having ectodermal dysplasia in the United States. However, there's more than 180 different types of ectodermal dysplasia on record, and each person has different symptoms to the last. There's no cure - only management of symptoms. 

Apart from the lack of growth of hair, skin, nails, glands and teeth (Gaydos herself does not have teeth), people with the condition also struggle regulate body temperature and sweat. Overheating is a concern, so air condition, shade and extra water is crucial.

However, Gaydos has learned how to manage the symptoms, and has thrown herself into the fashion industry with absolute passion and an inspiring sense of self-love.

“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,” she told HuffPost

"[My body] doesn’t bother me in any way. It never really has bothered me, except for when I was younger. But that’s because any issues that [came] from having ectodermal dysplasia were just because other people saw problems with it.”

"Any issues that [came] from having ectodermal dysplasia were just because other people saw problems with it.”

The model's confidence, boldness, and outspokenness has won her thousands of fans across the globe. In a recent interview with Outspeak, Gaydos said, "I don't really care if the fashion world likes me or not."

Gaydos had never considered being a model due to her condition, but during her time studying art at the Pratt Insitute in New York City, she inevitably became the subject of a photograph. She eventually emailed a photographer whose work she admired, and they invited her to be part of a photo shoot. 

Since stumbling across the profession at art school, Gaydos has been feature in an uncountable amount of editorials and campaigns, performed in an installation series with FKA Twigs, and has even been featured in a BBC documentary series called 'Countdown To Life: The Extraordinary Making Of You'.

However, it's her her avant-garde, high-fashion modelling portfolio that has gained her over 200,000 loyal fans altogether on Facebook and Instagram

"I don't really care if the fashion world likes me or not."

Most recently, Gaydos was photographed by famous photographer Tim Walker for i-D Magazine's summer issue (above). She's now busy organising bookings for modelling work across Europe for the summer.

The model, artist, and activist subverting the gender binary
"We are coded to behave in this regimented way, and my whole being is about rebellion and breaking free — showing the younger generation that you can be whatever you want to be."
Over 150 people with a disability will march in Mardi Gras this year
“We see our disability and sexuality as key parts of our identities.”
Coming out as gay with a disability
How do you navigate having a disability and finding love as an LGBTQI young person? Insight meets one man creating a safe space for sexuality and disability.