19 May 2015

Ichthyosis Awareness Month - Kaleigh's story: "Life is short and I’m not going to spend it letting my condition run my life."

I first met Kaleigh after I read her article on Yahoo about life with Netherton's Syndrome. She writes so well - I've been following her work ever since. She has a great perspective on life. And such a supportive family. Meet Kaleigh. 

"If you had told me at age 15 that I’d be as happy and independent as I am now at 21, I probably would have laughed in your face. Or rolled my eyes like many angst-ridden teens do.

However, I wasn’t filled with angst for any of the reasons that most 15-year-olds do. While many of my friends worried over boys or a few pimples that sprouted the morning of our school’s homecoming dance, I had much bigger, heavier things on my mind. But, let’s back up a little bit and I’ll tell you about myself.
My name is Kaleigh Fasanella and I’m from a small town in New Jersey called Medford Lakes. And yes, the whole town is actually filled with lakes – it’s quite lovely. As I mentioned above, I am 21 years old and currently a student at Penn State University studying journalism. I have an identical twin sister and we were both born with Netherton Syndrome, a rare form of Ichthyosis.
I always say that I can rarely recall memories from my childhood unless they involved going to see our specialist, having a flare up or something related to the condition that took over my life. And as a young adult, I watched my friends do things that I couldn’t when I was sick such as go to the beach or hang out at one of the local lakes with boys on warm summer days. I struggled with feelings of resentment and strong, green-monster-like envy of those around me who were ‘normal.’

But honestly, my story is one of success. Sure, times were trying and growing up as the ‘sick kid’ was never easy, but what I’ve learned over the years is that things could be so much worse. When it comes down to it, adapting a sense of gratitude and awareness for all of the good people and things in my life, combined with empowering myself to learn more about my own body, is what ultimately saved me.

Every single day I am beyond grateful for the amazing people in my life. My family and friends have gotten me through many dark days – without them, I wouldn’t be here. When I learned that my skin was sensitive to certain foods like dairy products and gluten, my family helped me to figure out a diet that would work for me and not make me feel deprived. Additionally, my parents never let me feel sorry for myself for too long. They pushed me to be strong, to be a good person and to see my inner beauty.
Nowadays, Netherton Syndrome does not control me. Most days, I don’t even think about it. Sure, sometimes it’s frustrating when I’m going through a flare up and just want to wear a dazzling dress out with my friends, but then I get over it and move on. Because there are more important things to worry about, you know?

I’m definitely not the wisest person but I do know this: life is short and I’m not going to spend it letting my condition run my life. I’m in charge of my happiness and how I handle things. And so far, I think I’m doing a pretty good job. Attitude is everything – cheesy but beyond true.

Thank you Carly for letting me share my story!"

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here. 

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  1. Kaleigh, you make me smile! You are so strong, and so are your parents and sister! I hope my son with NS grows to be as well-rounded and strong as you are!

  2. Great story and what a smart beauty!

  3. Great story!! Our daughter also has Netherton Syndrome. Thanks for sharing!


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