Ilka Brühl was born with rare facial defect – now she’s breaking beauty standards with her modeling career

Unfortunately, this is something that happens all the time, among both children and adults, and it is never acceptable. Just ask Ilka Brühl, who was born with ectodermal dysplasia, a rare genetic disorder that affected her facial structure.

The German girl was called evil names in school, and in the end wished for a way to make herself invisible. At the same time, she was a fantastic student, and ultimately realized that she could help others by telling her own story.

Today, Ilka is a model and published author. Through social media and a podcast she runs, she aims to help encourage people to see their own beauty and accept one another for who they are.

This is her incredible story, and what she looks like today, aged 30.

Now, I want you, the person reading this, to take a moment to reflect on your life at 16. Personally, I have plenty of memories from that time – both good and bad. But overall, it was a time when many things were changing. There were more hormones, an overload of emotions, and sometimes even mental challenges that I had to combat.

Now, imagine that at 16 years of age, you were called “Freak,” “Alien,” or “Pig Nose.” Just imagine that no one wanted to play with you at school, and when other children saw you, they pointed and laughed.

Most of us have never been subjected to such cruelty. For German girl Ilka Brühl, however, it was an every day reality.

Ilka was born with a cleft nose and lips. It’s called ectodermal dysplasia, a rare genetic disorder that affects one’s facial structure.

She suffered from the deformity for a long time before undergoing surgery to fix it.

Afterwards, though, she came to realize that her looks weren’t defined by her deformity at all. Instead, Ilka realized that beauty could not be created through surgery – and managed to accept her face as it was.

These days, Ilka is a role model for millions of people worldwide. Through her own work, she wants to help others.

Right up to the day she was born, in January 1992, Ilka Brühl’s parents thought their daughter was completely healthy. In fact, she was. However, doctors noticed that the little girl had trouble breathing. The airways in her nose had, for some reason, become blocked.

This meant emergency surgery, and surgeons operated on her cleft palate. By then, it was clearly apparent that something was “different” with little Ilka.

School can be a very harsh place for many children worldwide. Unfortunately, Ilka came to understand that better than most. Children at her school didn’t understand that she was just like everyone else, even if her face looked slightly unusual.

As per reports, kids at school asked questions about her looks and laughed at her. 

“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 told German newspaper Kurier.

Even though she was a beautiful little girl, bullies at school were relentless. They called her names like “Freak,” “Alien,” or “Pig Nose” and never wanted to play with her.

“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.”

Didn’t want photos of herself at home
She added: “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?’”

Ilka even intentionally made faces in photos, so her parents wouldn’t hang up pictures of her at home.

“That was my avoidance strategy,” she said. “If I look at photos so stupidly that my mom doesn’t hang it up, then I don’t have to see it either.”

When Ilka became a teenager, she developed even more self-doubt. Not only because of what she heard at school, but also through commercials on television. Companies constantly put out ads that gave people social ideas of what beauty was, she recalled, and Ilka felt she wasn’t represented anywhere. As a result, the girl felt ashamed of showing her face, saying it was even more shameful than showing herself naked.

Though she heard plenty of mean things in school, however, she refused to let anyone get under her skin. Ilka was a straight A-student, and got the best grades in her year. 

As for her low self-esteem and self-confidence, Ilka had a hard time making friends.

She underwent ten operations, and though she had trouble accepting herself, things eventually started to change for the better. She realized she wasn’t worth less than anyone else, and soon turned into a confident woman who wanted to be an inspiration for others.

Everything changed in 2014 when she was on her way to her first photoshoot.

“On the way to [the photographer], I was on the verge of turning around several times because I was so terrified that she would laugh at me when she saw me in real life,” she wrote, as reported by Insider.

“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 added.

When Ilka was 20, she underwent nose correction surgery. It was mostly for medical reasons, but up until the operation, Ilka thought the procedure would finally give her the courage to love herself.

“I decided to show a baby photo of me. Because you see my ‘defect’ there better. Furthermore, I get many direct messages with the question of why I look like I do,” she wrote.

“At first, I hesitated because some of you think that’s too much. But that is wrong, it should be as normal as every other baby picture.”

She added in a Facebook post: “Everyone who knows me can confirm that it is really important for me and that I want to help others. Want to help the ones with some defects, as well as the parents of babies who are afraid if their child will be accepted in the world.”

Moreover, after Project Grenzenlos aired in 2018, Ilka has done more and more modeling jobs – and she sure looks fantastic!