Meet Katie Cunningham


Name:  Katie Cunningham

Age: 25

Occupation: Full time student, peer tutor, and Peer mentor

Location: During the semester: Unity, Maine; summer months: Charlton, Massachusetts

Skin Condition: Ectodermal Dysplasia

I feel like people with skin conditions often have a one-line explanation that they use to explain their skin condition to others. Tell us yours. 

My skin condition basically makes it so I can’t sweat, I have deformed nails, and sparse hair

What are you up to in life right now? 

Right now, I’m a full-time student at Unity College in Maine. I’m studying Captive Wildlife Care and Education in hopes of becoming an animal rehabber. I also work at my college’s learning center. I help students in certain classes and help give good college survival tips to anyone in need!

 You moved recently and living in a new climate made your skin go haywire. Tell us about it. How are you dealing?

Last semester I had to advocate for myself all the time to get what I needed to thrive. The dorm I was placed in was not air conditioned, and for someone with my skin condition it was not a good environment. I had to fight to be able to be moved to a new dorm. They promised I would have access to an AC in this dorm, but when I went into my new dorm it was 85 degrees in there. They refused to let me put in an AC and instead gave me a window fan and said it was good. I’m still fighting this; next semester I should be allowed to bring my own AC to school.

This semester moving up here I noticed a big reemergence of a lot of old skin issues. I have a bunch of infected nails, my skin is drying out, and the newest symptom is incredibly blurry eyes. The health center up here has no knowledge of my condition, so everything I’ve been doing is stuff I brought with me. For the infected nails I need to use Epsom salt and vinegar soaks. For the dry skin I use special creams, and for my blurry eyes I use saline drops. It’s all about expecting the unexpected when it comes to moving to a new climate with a skin condition. Bring everything with you when you move, even if it’s just for a short period of time. It’s better to be prepared than to be running around looking for supplies to take care of yourself.

 You’re really into anime and cosplay (for people that don’t know, that’s the practice of dressing up as a fictional character), and it looks like you’ve found a real home in those communities. I’m curious if temporarily occupying these other worlds—via costumes, conventions, games, books, etc—helps you live with your skin disease IRL. 

I’ve always been really imaginative. I used to always like to play make believe and pretend I was the heroes I read about. So, I think cosplay really let me tap into that. It gave me a chance to get out of my skin, and into a skin of a hero. The hero’s I used to read about didn’t care about looks, they only cared about helping people. And sometimes it was nice to pretend I was someone who didn’t care about what people thought of me. Cosplay gives me an escape and a way to be someone who is stronger than I am. It’s a coping mechanism in a way.

Sarah Harris