Ilka Brühl – born with ectodermal dysplasia is breaking beauty standards with her modeling career

Ilka Brühl was born in 1992 and from the moment she was born, they were able to notice that all wasn’t well with the baby. The Airways in her nose was blocked which led to surgeons operating on her left cleft.

When she started schooling, her peers always picked on her because of her appearance.


She told the German newspaper Kurier, “At first I thought: How else am I supposed to look like? That’s how I am! But then I consciously looked in the mirror and realized that my nose is different. Then you start questioning yourself.”

She was often called “Freak,” “Alien,” or “Pig Nose”.


“As a child, I often had eye infections because my tear duct was not developed, and headaches because my paranasal sinuses were very susceptible to moisture,” Ilka said. But I was always able to live with the symptoms.”

My parents always gave me the feeling that I was right the way I was. As a child, I could confidently counter stupid sayings or looks. Nevertheless, the question came up during puberty: ‘If I’m supposed to be so normal – why don’t you see people like me anywhere?’”


As a teenager, it became harder for her. The commercials on the TV always portrayed a particular standard for beauty and she became more ashamed of showing her face.

Along the way, she knew she didn’t have to hate her looks or doubt whether she is beautiful or not. She started working on her confidence and self-esteem. In 2014, she got her first photo shoot.


She almost turned back because she thought they were going to laugh at her when they see her face.

“Being in front of the camera has shown me: Every defect and every mistake is a part of you, and that’s okay too. You just have to make the most of it,” she said.


At the age of 20, she underwent another surgery for health reasons and somehow hoped it could change her looks.

Ilka told BILD, “As soon as the wounds had healed, I noticed the next blemish. At that moment I realized: Beauty cannot be created on the operating table. For me, [beauty] is all about appearance. If you accept yourself, then you can shine from within and that’s nicer than the most perfect person who doesn’t like themselves.”

She realized she didn’t need other people’s opinions to make herself better, she just have to accept and love herself.

She started a podcast to talk about issues with self-doubt and esteem and in 2018 she started a campaign, 

project limitless,  with her friends. It is aimed at highlighting the beauty of those who live with deformities and other differences.

Ilka went on to get other modeling gigs from there and today she lives happily with her husband,  Philip.

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