By Shannon Lane @Shannonroselane

A 22-YEAR-OLD cites his rare condition, which affects his teeth, hair and sweat glands, with helping him become a model

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Videographer / director: Adam Gray, Samuel Russell
Producer: Shannon Lane, James Thorne
Editor: Thom Johnson

Brooks Ginnan, from New York, was born with ectodermal dysplasia, a rare genetic disorder.

Brooks told BTV: "I believe the statistic is about 1 in 100,000 babies are born with this.

“It is a condition that affects my teeth, hairs, sweat glands and a number of other aspects of my life.

"I think a way it affects me a lot is usually in summer because I actually don’t have sweat glands in my body so I am prone to getting overheated.”

Brooks parent’s knew something was different about their son from a very young age.

He said: " I had already been diagnosed when I think I was just a few months old after my parents had noticed that I was getting very red when they were going out in the summer.

“They noticed that I wasn’t sweating and I think at that point they realised that something was wrong with my body."

Fortunately at school Brooks was rarely bullied, however he still felt self-conscious about his unique appearance his entire childhood.

He said: "I think I always knew that I had it and I always did feel different, I think that just being aware that when you are growing up you know, your teeth are different, your hairs are different.

"Even though I haven’t faced much bullying I still think that almost the hardest part of growing up with it was what I kind of imposed on myself, feeling different than other people or feeling kind of like an alien compared to other kids."

When he goes out in public, Brooks is frequently asked if he is sick and has even been mistaken for a cancer patient.

He said: “I had a lot of questions, 'are you albino, do you have cancer?' and I think the cancer one has always gotten to me.

"And even now when I get asked questions like that if I am in public or something I think it is a bit traumatizing.”.

Brooks has found refuge in creating music  but never thought he would be able to be a successful musician due to his condition.

He said: “I even have a memory when I was 13 or something and really falling in love with music and wanting to be a musician I think that was first kind of a serious dream or goal that I had.

“And I just remember thinking it is a nice dream, but I can never be that because then I have to be in front of the camera to do a music video or something.

"And I always remembered thinking because what I looked like I could never do anything and I think now most of my big paying jobs are being in other’s music videos and to me it is surreal every time."

In 2017 Brooks began modelling for a friend, and it was the first time he realised he could have a successful career in modelling.

A year ago, he made the brave decision to leave school and pursue modelling instead, and Brooks has never looked back.

He said: “About a year ago I dropped out of school to pursue this full time and move to New York and it kind of all snowballed to meeting someone who ended up scouting me for my agency - that kind of blows my mind and I am so grateful."

The 22-year-old has now modelled for brands around the world, both on catwalk and editorial. 

And now the unique model praises his rare condition for helping him get to where he is.

He said: “I think that modelling has completely helped me to embrace every part of myself. To be able to address my external story, to address my body in ways that nothing else has ever done to me.

"I feel like I do everything for my younger self or other versions of my younger self that are present in the world today as kids with ectodermal dysplasia.

"I just want people to know that despite of being born with this they can be whatever they want.”