“Hey there, my name is Callie, and I was born with Lamellar Ichthyosis.

Oh, where to start? I was born in a small town in Canada, where we experience the harshest of winters (-50 Celsius is a real thing here), and scorching hot summers. As far as my family and I are aware, there is no history of ichthyosis on either sides of the family. I always used to giggle when dermatologists explained that there was the “one in four chance” of my parents having a baby with ichthyosis…guess what? I was baby #4!

I grew up in a very small town (about 2,500 people), which I always considered a blessing in disguise. Everyone knew who I was; there was no questions to be asked. Growing up, I can only recall one or two occasions where I was bullied because of my skin. I was just a regular kid. However, that did not prepare me for what would happen when I left town, and ventured into the cities. It was seemingly endless amounts of mental breakdowns over the old age question, “were you burnt?” 

I soon realized that, despite what I thought, the world didn’t revolve around me, or my skin. People are mean, people ask things at inappropriate times, and people are sometimes downright ignorant. I had a choice, I could spend my life hiding, or I could go out and live. 9 times out of 10, their comments roll off my back now…however there is the odd time that I allow myself to get upset.

Surprisingly enough, the biggest challenge I have faced in my life is the fact that I don’t sweat. It really puts a damper on my mood when I’m getting a good workout in at the gym. Other than that, I am a normal 22 year old woman. I am currently completing my Bachelor of Commerce Degree, have obtained a Business Administration Diploma, currently hold the position of President of my college’s students’ association, keep excellent marks (currently on the honor roll, woo hoo!), will be pursuing a career in financial services, and most importantly (to me) I have an amazing boyfriend who I am getting prepared to start a life with. 

Let’s talk about him for a moment, because I love to talk about him. I honest to God thought I was going to die alone. It was just something I had accepted. Then this kid came crashing into my life one day. He is protective, he doesn’t ask questions…he just…is okay with it. My skin has never been an issue between us…not even when we wake up with bed sheets covered in skin. He asked me once when I attempted to sweep them off in embarrassment, “if I don’t care about it, why do you?” He makes me see the world in better form. He made me realize that I am beautiful, I am worthy, and most of all, I am capable of being loved. 

Life is good friends, even if sometimes it feels like the world is out to get you. Something I tell myself each morning when I am feeling down is “my skin is on me…I am not my skin”. I won’t let it control me. I won’t let it hold me back. If you have ichthyosis, neither should you. “

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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