What My Rare Genetic Skin Condition Taught Me About Beauty

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Being labeled the class “frosted flake” in the first grade was a blow to my ego that I’ll most likely never forget. Dramatic, perhaps—but sadly true. Up until that moment, I was under the misguided impression that I was perfect (thanks mom and dad), but once I hit elementary school, the kids made sure to remind me that I was anything but.

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My twin sister and I were born with Netherton’s Syndrome, a rare genetic skin condition that affects the skin, hair, and immune systems of one in 200,000 newborns. We like to joke that we split the disorder since we seem to have been blessed with a milder form than some, but kidding aside, we were incredibly lucky just to have hair.

 

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People with Netherton’s have what is called “bamboo hair,” which in short, means it’s extremely fragile and prone to breakage. My sister and I didn’t even really start to grow hair until we were toddlers, and even then we were often mistaken for boys because of how short it was. Other ailments that characterized our condition were red, scaly skin and a painful rash. My mom would always say it looked like we had ringworm, which is pretty spot-on. When I was really young, I remember wondering why we couldn’t just wash it off. We tried countless steroid creams and oral antibiotics, but our frequent trips to the dermatologist always ended the same—with him telling us they hadn’t found a cure yet, but to see if this new treatment helps. 

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I’ll spare the sob story, but growing up as “the sick kid” wasn’t exactly a June picnic. I spent the majority of my childhood wondering, “why me?” and feeling like an outcast next to my peers. I attended a Catholic school where weekly masses were standard and one thing I’ll never forget is how many of the other kids refused to shake my hand during the “peace be with you” portion of the ceremony. The doctors said my condition would most likely improve after adolescence, but it doesn’t take a genius to realize that adolescence is already an emotional roller coaster for most—even sans the skin condition.

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The summer before my freshman year of high school I attended a camp for kids with a myriad of skin conditions. After that, something inside me switched. The things I’d seen opened my eyes—so many of these kids had it way rougher than I did and they still managed to be happy. Their strength was awe-inspiring. I was done with all the self-pity and I knew that if things were ever going to look up for me, I needed to take charge of my life and get proactive. From then on, with the help of my family, I dedicated my time to figuring out how I could change my lifestyle in order to get healthier. For starters, I ditched the processed junk food I’d become accustomed to along with all dairy and most gluten products for cleaner foods and tons of vegetables that helped boost my immune system.

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Developing a more positive, grateful outlook on life was also something that made a monumental difference in my life. My father always assured me that I was really lucky, and for a long time I shrugged him off because I felt like the unluckiest girl in the world. Finally I recognized that he was so right. Instead of fixating on the negative aspects on my life, I reflected on all the good—gratitude journals are amazing for that. You’d be surprised at how many things you have to be thankful for once you start writing them down every night. Throughout my freshman year, despite my attitude adjustment and changes in my diet, I still missed over 40 days of school due to various skin infections. During this time, instead of wallowing, I continued with my gratitude journals, which helped me stay focused on the positive. For me, it was even the most trivial things like “had a good hair day today” that mattered the most, because hello, I wasn’t even supposed to have hair. 

I soon stumbled upon the world of beauty through YouTube and quickly found comfort in watching girls like Ingrid Nilsen from MissGlamorazzi and Estèe from Essie Button chat about makeup and the products they adored. I tapped into my own love for products—foundation became the best friend to my perpetually-red complexion and a slew of exfoliating scrubs soon filled up my bathroom shelves due to my need to daily exfoliate. As time went on though, I realized that these YouTube gurus also inspired me because of their assurance that you don’t need makeup to be beautiful. They preached self love and the importance of feeling good in your own skin—something I really related to. Throughout these few years I definitely made a lot of progress in my life, but that still didn’t stop me from looking at my friends with their perfect skin and enviously wondering, “why can’t I look like that?”

Related: Do Part-Time Vegans Have Better Skin? 

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Fast forward a few years and here I am: a junior at Penn State with big dreams of moving to New York and becoming a beauty editor. Now that I’m older, and I like to think a little wiser, I’ve realized that while this skin condition has shown me some truly trying times in my life, it’s also showed me pure beauty. How? Because beauty is bonding with my twin sister over an ailment only we can understand. Beauty is my mom looking me in the eyes when I’m sick and telling me she would trade places with me in a millisecond if she could. Beauty is my dad tearing up at my prom and telling me how gorgeous I look. Beauty is my friends and boyfriend doing whatever they could to build me up when I was at my worst. Because of them, I am able to look in the mirror even when I’m at my weakest and say, “you are beautiful and this will pass. Everyone has their own battle.”

If I had the chance to somehow go back in time and be born completely healthy, I can now confidently say that I would take a pass. It may sound odd to some, but growing up with this skin condition has shaped the way I approach beauty, and I wouldn’t want it any other way. It has molded me into a compassionate, non-judgmental person who sees the beauty in everyone.

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I hope my story reaches every person out there who has ever felt ugly because of something that made him or her different. Please know that you are not alone, that you are incredibly beautiful, and that how you glow from within is vastly more important than your outer armor.


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