Xeroderma Pigmentosm: Katie’s Story

When I was a toddler, I was diagnosed with Xeroderma Pigmentosm (XP). You are probably thinking, “What is that and how do I even begin to pronounce that fancy-looking word?” Well, let me help you out a bit. Zee·row·dur·muh puhg·muhn·tow·sm is a life-threatening genetic disorder that prevents me from ever being in sunlight. I know what you’re thinking… a pretty burdensome scenario for a toddler that probably only wanted to run around with her friends at recess time. I was diagnosed with this condition when I was 2 years old. My name is Katie Mahar, and this is my story.

Let me tell you a little about my condition. I usually protect myself from sunlight at all costs. Despite the rigorous protection, this disease also produces other side effects, including neurological issues. The problem is, the sun’s rays are too strong for my skin to handle, which causes damage to my DNA beyond repair.

Over time, the sun has caused me to have developmental issues. I started going deaf by the time I turned 11. On top of that, my eyesight declined, as well as my overall health growth. By the time I turned 18, I was profoundly deaf. Nonetheless, I managed to graduate high school in 2010. I continued pushing myself harder than ever before, I graduated with my associate’s degree in science from a community college in 2013. Completing my education was definitely a challenge but I sure excelled in English and Art. As I thought being deaf was as tough as it could get, I got sick with Lyme halfway through my second associate’s degree (which I did not finish).
My sun condition and Lyme caused my eyesight to decline. However, I was able to figure out how to balance it. With a patch over one eye, I was able to stop the other eye from getting worse. These challenges sure marked my younger years, and now, I’ve reached adulthood. One day I thought to myself, “it is heartbreaking that I can’t understand what people were saying to me most of the time.” So it was at this point that I decided to get a cochlear implant. I was 25. Thankfully, and my hearing came back, which allowed me to attend social events.

It seems that my whole life so far, I have been put in situations where I am forced to be isolated from real social contact. I am physically unable to go outside during the day. I don’t have the same opportunities as everyone else. I’m not going to lie to you, it did get lonesome at times. It hurts to see or hear other people being outside, doing all the things that I can’t do with them. When the sun goes down and I’m finally able to go outside without my mask on, everyone is getting ready for bed. However, I decided there’s another way to look at the situation. I’m not the only person that feels left out. I can and will find comfort in engaging in other things I enjoy doing. I will focus on my art and my cooking. Additionally, the fact that I have had pets my whole life has helped me on a social level. Sometimes it’s really the little things that make your days a little brighter.

Although, I will inevitably continue to suffer every day due to my neurological deterioration; I know I have to keep an open mind and push forward even at the times when I feel the most lonely. It’s heartening to know that even though I can’t do the same things as someone who can be in daylight, I’m not alone in the world, and other people have their own stories too. Hearing what they have to say is inspiring to me. Hearing about where people come from makes my heart warm. It gives me the last push of motivation towards trying new activities, jobs and doing what “normal” people do.
Letting something like my sun situation dictate my life for how limited I may be is one way to look at it. But, seeing people around me and hearing their stories gives me faith in what I can and will do one day. I am destined for amazing things. And, to be honest, I like the unknowingness of what the future holds. My good friend asked me to write this article to share how I learned differently. After meeting people throughout my life, going to college with, and being good friends with his son (who has his own story), I am reminded that I belong somewhere. People from my camp and these friends all know that in their own way. This is my story.