Mark’s Story

Faces of the Foundation:
2017

Condition:
Lamellar Ichthyosis

Resources:
Mayo Clinic

National Institute of Arthritis and Musculoskeletal and Skin Diseases

WebMD

 

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Meet Mark.

I was born with Lamellar Ichthyosis, a genetic, chronic skin disease. Both my sister and I have it. Only 1:500,000 people are born with it per year. It causes severe brown colored scaling and cracking of the skin all over my body, and I am unable to sweat. There is no cure. I sometimes see myself as a dragon.

We are all different, with our own struggles, passions, interests, strengths and weaknesses. It hurts when I feel I don’t fit in or belong. Being visibly physically different is very hard. When I was in elementary school and it was time to hold hands for games, kids would put their hands in their shirts before they would take my hand. When playing ball, if I had the ball I wouldn’t have to run, because most of the kids wouldn’t try to chase or touch me. My disease is not contagious, but everyone was afraid. That feeling of not belonging has stuck with me for many years.

What I want everyone to know is that I am a person who wants to enjoy the simple pleasures in life just like you. I love the warm sunshine on my face, being with people, the warm embrace of hugs, feeling someone sitting next to me. When someone is willing to touch me, it means so much. I am a “touchy-feely” person; that is one way I understand love. I hope when you encounter someone different, you try to see them first as just another human being. Figure out who they are, and then you’ll know how to treat them.

I love reading; some of my favorite books are The Chronicles of Narnia by CS Lewis, Harry Potter by JK Rowling, The Wheel of Time series by Robert Jordan, and Song of Ice and Fire by George R.R. Martin. I also love science fiction films; my favorite is the Star Wars series. I can get lost in music, and love Christian rock, Mumford & Sons, Ed Sheeran, Indie, and Folk.

I currently attend Cincinnati State Community College. This semester I’m studying film editing and Photoshop. My last class project was a mock-up of an album cover for a band called Beartooth. It was amazing! I really hope to work in the E-media, film, and photography industries. I’m also very interested in business management.

I like to volunteer at our local homeless shelters, and plan to offer my services soon at animal shelters. I love animals, especially dogs.

There are times when I try to hide some of my differences, and other times some of them fill me with pride. A lot depends on how people react when they approach me. They would be surprised to discover how playful a person I can be when I can feel comfortable in the skin I’m in.

Mark’s Photography Photos

Mark’s Photos

Mark’s Blog

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