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One woman opens up about her lifelong struggle with eczema, which she developed at birth—and both she and her parents have been juggling the costs ever since.

June 20, 2017

I was born with eczema, and I mean that literally. I developed a rash before I even left the hospital and had to be treated with penicillin. But the eczema didn’t go away after that: for the first month of my life, I developed rashes in the folds of my skin, such as behind my legs, on my neck, and inside my arms. My parents took me to different hospitals looking for an answer, but the doctors were stumped.

It wasn’t until I was five years old that my parents finally found a pediatrician—60 miles away from our home—who could identify my skin condition. By then, my symptoms had worsened, and I’d been hospitalized for infections multiple times. My new pediatrician recommended I undergo testing at the National Jewish Hospital in Denver, Colorado, which was one of the leading institutes for allergies and skin conditions at the time. My parents agreed; they didn’t want me to be on topical steroids for the rest of my life, and back then, that was my only option. So when I was six years old, my mom drove me and my 10-year-old sister from Michigan to Colorado, where I did a six-week in-patient stay at National Jewish Hospital. Since my parents owned their own business at the time, my dad stayed home to work, and my mom and sister camped out in a nearby hotel and visited me every day. I remember how nerve-wracking it was to stay in a big hospital room all by myself—it was the first time I’d been separated from my family for that long.

I left the hospital knowing how to do wet-wrap therapy, which involves soaking dressings for the skin in warm water, placing a dry dressing on top, then wrapping the skin overnight to lock in moisture on the skin.  It really helped, and as a result, I was able to taper off the topical steroids and rely mostly on over-the-counter lotions to ease my symptoms. I still missed a lot of school, though; when the weather was bad, I had to stay indoors for recess, and my mom had to chaperone all of my field trips. But throughout my school years, my skin stayed pretty much the same. It also helped that I lived in a small town—my teachers and friends knew I had eczema, and everyone was understanding.

But when I went to college, I started relying too much on the topical steroid cream. I shouldn't have used it so much of it, but I wanted to fit in, and I didn’t want to be known as "that girl with eczema." I struggled to take care of my skin during this time. I only had catastrophic insurance and I couldn’t afford to refill my prescriptions when I needed them. When I graduated and started working as a paralegal, my health improved because I could finally take care of myself.

RELATED: How to Stop Itching Your Skin If You Have Eczema

I later learned that when I was a child, my parents had trouble finding an insurer who would cover them (or me, really) since they owned a business. They ended paying for my hospital bills out-of-pocket; my stay at National Jewish cost them about $35,000, and that was in 1987. It took them about 15 years to pay off the bill.

Today, I’m taking a prescription for my skin, and I can see a difference. I also realize that I’m one of the lucky ones. Eczema can be expensive, and there are many people who can’t afford to take time off work to visit a doctor. Even over-the-counter lotions add up. I’d spend $8 on one moisturizer, find out that it didn’t work for me, and have to buy another one. When the Affordable Care Act was passed, I felt like I had an extra layer of protection. But now, I’m not sure if that bill will be repealed. Even today, I’m hesitant to give out too much information about myself—I worry that years in the future, a prospective employer will notice I have a chronic condition and not want to hire me. In that way, eczema continues to be a stressful part of my life, even when it's under control.

 

Lindsay Jones, as told to Maria Masters