Advocacy isn't as hard as you think: here's how I make a difference in people's lives by sharing my story with politicians.
Published On: Apr 7, 2019
Last Updated On: Oct 24, 2020
I have decided to share my story because I know firsthand—being diagnosed at age 2 and working as a nurse with patients who suffer from atopic dermatitis (AD)—that we like to know we are not alone. I also feel that it has significantly impacted my career as a registered nurse (RN).
I’ve had AD since I was 2 years old. That’s 29 years of my life! I grew up in a small town on a beautiful horse ranch in New Mexico with acres of alfalfa that surrounded my family home. I am the middle child of five. We all worked on the ranch moving irrigation pipe, bailing hay and taking care of the animals.
Unfortunately, the farm life was not a good environment for someone with AD to live in. I could not participate in many family activities. Along with my head-to-toe rash, I also suffered from asthma and allergies. I was allergic to the horses on our ranch, the hay and even the trees.
I also had a lot of food allergies. My first food allergy scare sent me to the hospital, nearly killing me at the age of 7. My parents did not know what to do with me. We traveled to many doctor appointments. I tried everything, including a visit to a medicine woman on the Indian reservation.
Some of the earliest memories of having eczema was waking up in a bed full of scabs and blood. My mom would literally have to wrap my arms with rags and tie my hands down at night so that I would not scratch. I would scream in pain and have anxiety attacks many nights. Not only was it painful, it was embarrassing. Kids didn’t want to play with me because they thought it was contagious.
As I got older, my AD got a little better due to new medications on the market. I still suffered during my teenage years with the embarrassment of having it on my face. But I had better methods of getting through an itch attack.
High school was not fun for me. My insecurities as a young child had stuck with me through the years, and I made poor decisions with the people I hung out with. Luckily, I had my mind set on going to college and becoming a nurse.
I always wanted to be a nurse for as long as I can remember. I think having eczema and going to many doctor appointments played a role in that. The night I was rushed to the ER for the severe allergic reaction, I could remember a nurse that was so nice to me. She made me feel so calm in that very scary situation. I told my parents I wanted to be a nurse like her when I grew up.
During my college years, I had good control of my allergies, eczema and asthma. I almost thought I had “grown out of it.” When I finally became a RN, I took a job in California.
It was a few years into my nursing career when I noticed my allergy to latex had gotten worse. I started to flare up on my hands even when I avoided the latex. My eczema came back in full force, head-to-toe rash and allergies worse than ever.
I was back in that routine of steroids, infections and anxiety. Once again, I tried everything—allergy shots, holistic medicine and even a clinical trial. I believe this is what started my interest in dermatology and why I would eventually go on to care for other patients with eczema.
I ended up working in the dermatology department at a university hospital. I was an Excimer RN treating atopic dermatitis and other skin diseases. I loved working with patients that had eczema, and they loved the fact that I could understand what they were going through.
But my hands were suffering. It is not fun being a nurse with eczema on her hands. The harsh hand sanitizer and hospital soap killed my hands. The open sores put me at such high risk of infection, especially due to the contagious diseases that come through the dermatology department.
Fortunately, I finally found a job that was perfect for me. I started working remotely as a telehealth nurse caring for patients who have AD. Although I do miss the in-person patient contact, I don’t miss the eczema on my hands.
I still get to educate my eczema patients and listen to their stories. I know that I am so lucky to still get to do what I love doing. If I didn’t find this job, I am not sure how much longer I could have stayed in the field working directly with patients.
I still suffer with flare-ups, but I have a more positive outlook on life. I find comfort knowing there is more research and more awareness. I share my experiences living with AD as often as I can. I let people know it can be a serious condition that can lead to serious complications.
People with eczema know how much it can control their daily activities. It is not just an itchy rash that will go away if you stop scratching. Eczema is more than just physically painful. It can cause depression, anxiety and have a major impact on our lives. I will continue to do what I can to bring awareness to this disease and to help others living with it.