The NEA research team has published its latest paper on the out-of-pocket (OOP) costs of atopic dermatitis (AD) in the U.S. — this time examining OOP costs among caregivers of children with AD compared to adults.
Published On: May 25, 2017
Last Updated On: Jul 15, 2021
It is said that if it doesn’t kill you, it makes you stronger. My severe eczema has not killed me, but every day it tries to ruin my life. Physically, eczema is exhausting with the equivalent of 1,000 itchy, throbbing paper cuts on my body. Since birth, my disease has been unpredictable.At times, I cannot bend my joints without excruciating pain or bear to put on clothing. Out of necessity, I have become flexible, patient, and aware of my limitations. For example, if I was up late finishing a school project, I won’t play basketball at lunch, to conserve energy. I have no choice but to be very deliberate in organizing and balancing my activities.
When I’ve had the least control, I’ve learned the most. I waited until the last minute to finish my bridge project, but my medication made me fall asleep. I awoke in a puddle of drool and had balsa wood glued to my fingers. My disappointment and frustration turned into the realization that I will not always have control, so I never put off until tomorrow (unobtainable perfectionism), what I can do today (my excellent best). Now, I spread my homework over the entire week and avoid procrastination (as much as a teenager can).
Six years ago, after learning about camp Wonder in the National eczema association newsletter, I attended the week-long camp for kids with disfiguring, painful, and fatal skin diseases. We were allowed to be “normal” kids, enjoying a week of happiness where no one stares at your scars or leaves the swimming pool when you dive in. Camp inspired me to transform my negative energy into positive energy for raising awareness and money for camp Wonder. I host movies nights and PlayStation tournaments in my backyard using projectors, an all-you-can-eat candy counter, popcorn, and Slurpees. So far, my events have raised $12,000 for camp Wonder!
I often wondered why I am trapped in a body that constantly betrays me. Now I know that my personal insights and academic success will prepare me for a medical career. I could be a dermatologist helping patients sort through massive amounts of information, misinformation, advice, suggestions and approaches to understanding and treating eczema. I could engineer a cure, decode a gene mutation, or discover a new pharmaceutical therapy as a researcher. With a combination of my desire for social justice and my engineering-solving attitude, I could improve the medical delivery system in our country, create family support systems, and ensure access to all.
Some have suggested I take it slow and attend community college. Really? I’ve worked too hard and have too much to accomplish to let eczema keep me down. Eczema is one aspect of my life, but it is not who I am. So yes, I’ll admit my unwelcome nemesis eczema has made me stronger. A stronger son, brother, student and friend continuing on his life’s journey.