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

Beauty is in the eye of the beholder. This phrase could not ring with more truth. However, society has maimed the idea of beauty for many people. For so long, we have placed such high expectations of beauty standards, which excludes most of the world’s population, making them feel inferior. One German woman, a 30-year-old model with ectodermal dysplasia, has broken through the norms of society by putting herself in the limelight, regardless of the torment she experienced as a young girl.

The shame of not meeting beauty standards

Ilka Brühl is now 30 years old and a confident model. However, her past is riddled with bullying because of her different aesthetic. She was born with ectodermal dysplasia, resulting in a cleft nice and lips. “I was born with a facial cleft and my nose airways were not properly formed,” she said to Project Grenzenlos. “In addition, I lacked on the right side of the tear duct, so that the permanent natural moistening of the eye has led to me right tears have always run out of the eye.”

As a young girl, ilka was not aware of her deformities. But, as she grew into adolescence she became ashamed of her appearance thanks to society’s beauty standards. She even went as far as to say her naked body was less shameful than her face. So, she refrained from showing it as much as she could. “My parents always gave me the feeling that I was right the way I was,” said Ilka. “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 was so ashamed; she tried as best she could to keep her parents from putting pictures of her on the walls. She would pull funny faces, so they weren’t good enough to be mounted on the wall. The expectations of beauty standards had started taking their toll. “That was my avoidance strategy,” she said. “If I look at photos so stupidly that my mom doesn’t hang them up, then I don’t have to see it either.”

Rectifying beauty standards

Ilka went through most of her life with deformities that supposedly went against society’s beauty standards. She only attempted to fix her facial structure via surgery later in life. But then, she had an epiphany. Her beauty is not defined by her face but rather by a reflection of her soul. In an interview with a German newspaper called Kurier, Ilka said, “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.”

High school is difficult for most kids, but for Ilka, it was utter torment. Other classmates would call her names like “pig nose,” “alien,” or “freak” because she looked nothing like the beauty standards we have as a society. Instead of letting those nasty names get her down, she rose to the challenge. She now models with confidence and hopes to “remind the world that everyone is beautiful.”

About six years ago, Ilka decided to pose for some of her photographer friends. The feedback she got was so positive, she decided to do a few more photoshoots in the name of society’s false beauty standards. “There was so much positive feedback, that I got more and more courage to show myself as I am. Pure and unaffected.”

More about ectodermal dysplasia? 

Ectodermal dysplasia is a rare disorder whereby the person is born deformed, making it hard to fit the bill of society’s strict beauty standards. The Ectodermal structures, including the skin, nails, hair, sweat glands, and teeth, do not develop properly. Not every person with Ectodermal dysplasia shows the same deformities. One person might display problems with their sweat glands and teeth, while another might have issues with their hair or nails. 

Unfortunately, there is no cure for Ectodermal dysplasia. However, there are treatments for the symptoms and the physical deformities can be rectified. According to, other symptoms of the disorder include: “Abnormal fingernails and toenails, abnormal or missing teeth, an inability to sweat because of abnormal or absent sweat glands (which affects the body’s ability to regulate temperature), and sparse [or] thin hair on the scalp and body.”

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