Why I became an eczema advocate

Louisiana state legislature passed a bill for Eczema Awareness Month

By Abigail Llewellyn

Published On: May 18, 2018

Last Updated On: Jul 15, 2021

When I was 3 years old, my mother noticed I had a strange rash and took me to the local pediatrician. I was diagnosed with mild atopic dermatitis and contact dermatitis, mainly located on my arms and legs. My childhood was probably the best my eczema ever was. Everything started spiraling downward during my teenage years.

My normal eczema began to show up on my hands, along with these tiny blister-like bumps that turned out to be dyshidrotic eczema. Eczema even spread to parts of my scalp. It got to the point that my pediatrician did not know what to do, so he sent me to an allergist.

During my high school years, I struggled to surround myself with people who did not make comments or side remarks about my eczema. I began to wear only white uniform shirts to school to hide the fact my skin would flake off my neck and minimize the ridicule. This led to severe depression issues. I felt like a freak of nature, and there was nothing I could do to make my eczema stop.

On top of that, I became allergic to petroleum, which is in most eczema treatments. If I even touched a product with petroleum, I would go into anaphylaxis. Nothing was working, and the bullying was getting worse. My skin would noticeably flake, and kids would make hurtful comments. I began to wear only white uniform shirts to school to minimize the ridicule. I became severely depressed.

There were days when I could not find the energy to get up. I was told by my high school that dropping out was a good option. But this was not an option for me. I was a good student and had dreams of becoming a pediatrician. I finished high school at home by completing my studies online.

It was during my isolated senior year of high school that I realized my calling was to work with people who had eczema. I talked to my allergist about this, and he suggested I look into pre-med with a specialization in eczema treatment during my college years. Coincidentally, college was when the eczema spread to my entire body and my depression worsened.

Fighting for the rights of eczema patients

At college, I worked at an ice cream shop, where customers would stare at me and ask me if I was contagious or if I had leprosy. The management pushed me into doing the dirty work in the back of the store because my appearance “was not ideal for storefront.”

That’s when I knew I needed to 1) find a new job and 2) fight back against the stigma of eczema. Now I work for a tutoring service where I can tell high schoolers my story and help them understand that you can’t let anyone or anything hold you back.

Around the time I was trying to find a different job, I learned about the National Eczema Association and instantly signed up to become an advocate. I knew that I could make a change for people with eczema, especially in Louisiana.

I decided to email my senators asking them to declare October as Eczema Awareness Month in Louisiana. When Sen. Dan Morrish assisted me with getting it pushed into place, it was probably my proudest moment. Little did I know; this accomplishment was just the beginning of my work as an advocate for the National Eczema Association.

My eczema Prince Charming

Dating with eczema has been a disaster. Every date I have went on has resulted in the man staring at my eczema the entire time. John St. Clair is also a student at ULL, majoring in theater. I met him randomly, and instantly I knew he was someone I needed in my life.

On our first date, he talked to me and did not focus on my eczema. It was amazing to see someone interested in me, despite my eczema problems. Now our relationship has grown to be one of the most precious things in my life.

John is my rock, he helps me feel beautiful, even though my skin is covered in eczema scars and patches. The fact that I am constantly itching, or scratching much get on his nerves, because I know it gets on mine. He sees past that, and I cannot thank him enough for coming in my life when he did. He pushes me to try to find petroleum free treatments and even gave up using products that contained it or made my eczema worse.

Sir Pancakes, the Eczema Hamster

Right around the time when my eczema was at its worst, I learned of a hamster at a local pet store that the employees believed had a skin problem similar to eczema. Because of this, they could not sell him and were basically waiting for him to die. I went and picked him up as soon as I heard and took him straight to the vet. The vet said it looked like a type of eczema similar to my atopic dermatitis.

I named him Sir Pancakes because he had a regal walk. He was such a light in my life. Watching Pancake struggle with itch like I did – and yet still choosing to live his life as if he had nothing wrong with him – inspired me to never give up hope. Even when he developed a tumor in his mouth, he kept going.

From the moment I rescued him, to the moment he took his last breath on March 31, 2017, Pancake fought his health issues like a champ. He was the most amazing, furry, best friend I could have ever asked for.

Later in 2017, I was asked if I was interested in going to Washington, D.C., to represent the National Eczema Association at the American Academy of Dermatology legislative conference. Discussing eczema patient rights with Louisiana’s congressional members was a once-in-a-lifetime experience.

I still can’t find the words to describe my emotions when I was there. Meeting other people who battled lifelong skin conditions like eczema was amazing. It really fueled my fire to fight harder for people in the eczema community. I am eternally grateful for the opportunities that the National Eczema Association has given me, and I know Sir Pancakes would be proud.

Join Eczema Warriors across the country and NEA to fight for better care and treatments for eczema patients. Become an NEA advocate today!

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