Off The Record
Ilka Brühl Was Born With Rare Facial Defect – But Wait Till You See Her Today
No one deserves special treatment because of the way they appear.
This is a problem that affects both children and adults and should never be tolerated. Just ask Ilka Brühl, who was born with the rare genetic condition ectodermal dysplasia, which caused her facial structure to develop abnormally.
The German girl desperately desired invisibility after being called horrible names at school. She was also an excellent student who came to see that sharing her experience would benefit others.
Illka is now a published author and successful fashion model. She uses social media and a podcast she hosts to spread messages of self-love and acceptance.
Here is her amazing life tale, and this is what she looks like now that she’s 30 years old.
Take a moment to think back to when you were 16 years old, because I want you to remember that time in your life with fondness. I myself have many recollections, both pleasant and unpleasant, of that time period. However, many things were shifting throughout this age. More hormones, a plethora of feelings, and even mental obstacles had to be overcome.
Ilka Brühl – born with ectodermal dysplasia
Just like it was for me, I hope this period of your life was largely fruitful.
Now, at the age of 16, picture yourself being called names like “Freak,” “Alien,” and “Pig Nose.” Consider how it would feel if no one wanted to play with you and kids would make fun of you behind your back.
The vast majority of us have never been cruelly treated like that. However, for German girl Ilka Brühl, this was an everyday occurrence.
Ilka’s nose and lips were cleft at birth. Ectodermal dysplasia is a rare genetic condition that can cause abnormalities in facial development.
She endured much pain as a result of the abnormality before finally deciding to get surgery to correct it.
Later on, though, she understood that her appearance was more than just her deformities. Ilka, however, accepted her appearance without alteration.
There are now millions of individuals throughout the world who look up to Ilka as a role model. She hopes that her efforts will be able to aid those who are less fortunate.
History of Ilka Brühl’s Childhood
They believed their daughter was healthy all the way up to the day she was delivered in January 1992, when they learned otherwise. Yes, she actually was. But medical professionals saw that the child had difficulty breathing. There was a blockage in her nasal passages, making it difficult for her to breathe.
Therefore, doctors had no choice but to perform emergency surgery to repair her cleft palate. By that time, it was very plain that there was something “strange” about young Ilka.
For a lot of kids around the world, school is an extremely tough environment. Unhappily, Ilka realized this more than most. She was treated differently because of her somewhat different appearance, but the kids at school didn’t get it.
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The students reportedly teased her about her appearance and made fun of 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.
The kids at school were cruel to her despite the fact that she was a pretty girl. Children avoided her and called her names like “Freak,” “Alien,” and “Pig Nose,” and they were never invited to join in on any games.
“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 any selfies up in her room
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?’”
So that her parents wouldn’t display any images of her at home, Ilka would even consciously pull faces for the camera.
“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.”
In her adolescent years, Ilka’s already substantial amount of self-doubt only grew. She picked it up from TV commercials and what she heard at school. She recalled how she didn’t see herself reflected in the advertisements that were continuously being released by companies and giving people social conceptions of what beauty was. Since then, the girl has avoided public displays of her face, claiming that doing so is more humiliating to her than going nude.
She was subjected to a barrage of bullying at school, but she never let it affect her. Ilka had the highest GPA of any student in her class.
“It was like a kind of double life,” she recalled.
Everything changed before photoshoot
Because of her lack of confidence and high standards of self-worth, Ilka found it challenging to form friendships.
After undergoing ten procedures, she began to feel better about herself and finally begin to accept who she was. When she came to terms with the fact that she was of equal worth to everyone else, she blossomed into a self-assured woman who hoped to serve as an example to others.
In 2014, on the way to her first picture shoot, her life was turned upside down.
“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.
At the age of twenty, Ilka had surgery to alter the shape of her nose. Despite the fact that Ilka needed this surgery for practical reasons, she held out hope that thereafter she would be able to find the strength to truly love herself.
But things changed after the procedure.
“If you accept yourself, then you can shine from within”
“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,” Ilka told BILD.
“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.”
Ilka decided against taking any further cosmetic procedures after realizing she had other options. Learning to accept yourself more was more important than having other people accept her as a “normal” person.
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“I approached people more openly and learned to like myself. And noticed: The others don’t withdraw from me at all, I withdraw from them!”
While Ilka was aware that she presented “different,” she saw this as an asset. As an alternative, she yearned to celebrate her uniqueness. The woman born in Germany understood that by sharing her story, she could aid others in learning to love and accept themselves.
In response, Brühl published a podcast about her experience with self-doubt. She also offers advice on how to improve one’s own capacity for self-love. She’s even written a book about how she learned to accept and appreciate herself titled “Differently Beautiful.”
She and a couple buddies launched Project Grenzenlos (English: Project Limitless) in 2018. The goal of the campaign is to promote acceptance of persons who are physically or mentally altered. According to Ilka Brühl, it fits in with her idea of beauty.
Photos of Ilka Brühl Today
On Instagram, she wrote: “I think EVERYBODY is beautiful in his own way,. I often read comments like ‘You are not pretty just because you’re different,’ [and] that’s totally right! I am pretty because EVERYBODY is pretty. Never mind if you are a classic beauty, tall, small, stout, thin, black, white.”
Through her blog and Instagram, Ilka tells her narrative and gives readers a glimpse into her life. She has been working on a book for kids recently and has shown childhood photos on a few of occasions.
“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.”
Many people look up to Ilka as an inspiration because of who she is today. Because of social media, she has inspired individuals all around the world to embark on similar journeys, and now those people can share in her experiences as they unfold. Today, she has over 33,000 Instagram followers.
She wed her sweetheart Philip
Ilka has not only become an inspiration to others, but she has also learned to love her physical self. Furthermore, she has met her soul mate.
Philip and she tied the knot last year. Plus, they appear to be quite content with one another.
Ilka posted a photo of herself in her wedding gown to Instagram.
“The wedding itself was indescribably beautiful for me. When I woke up the next day, I couldn’t believe how great everything went,” Ilka wrote.
“Sunny weather, everyone was in a good mood and my husband (still want to say friend) looked so amazing. I was so emotional and shed so many tears. Loving someone so much is a great privilege and I am infinitely grateful for it. I’m so looking forward to everything that’s to come. I just can’t believe how lucky I am to be able to call such a great person my husband now.”
No one is without flaws. However, we should always treat each other with respect, regardless of whether someone is “different” in appearance or has a physical limitation.
Ilka Brühl is a role model, and her tale merits attention for that reason, as well as for the good it does!
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