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: Nov 17, 2017
Last Updated On: Jul 15, 2021
This is the first time that I have ever shared my story about growing up and living with eczema.
I do not remember a day without intense itching. The eczema usually stayed in the crook of my arms and behind my knees, but the flare-ups would include my neck, wrists, face, and worst of all, my eyes. Several things triggered it – humidity, sweating, woolens and crying. I never slept particularly well, but I just thought it was normal for me.
Not until junior high did I meet someone else with the condition. David rode the bus with me. He had the signature rashes too. He also tried to hide as best he could to avoid being made fun of.
My dad was in the military, so the family moved often. No matter where I lived, the rashes would still be ever present. My parents tried to get the best treatments; they knew that self-control alone could not stop the itching and the incessant scratching.
The military doctors did what they could and were often kind to me as a kid. They tried everything: cortisone creams, tar treatments, sulfur containing baths, oil baths, Eucerin and colloidal oatmeal. (I’m pretty sure my brother never ate oatmeal willingly.)
When I was a teen, the curse of acne arrived. The combination of the two conditions made me a case of interest at Walter Reed National Military Medical Center. As a young teen, I recall being in a cold room barely clothed with medical students looking at the rashes I tried so hard to hide from everyone else. They added Retinal-A and then Accutane to the mix of treatments—both of which inflamed everything, and to this day, define my notion of hell.
Despite the battle against the itching, I refused to have this thing beat me. I wanted to be a part of everything. I was a good student and kept myself busy. I danced, ran track and played softball. I held afterschool jobs and worked on the school paper.
I even got myself into the physical shape to apply for the military academies and Reserve Officers’ Training Corp (ROTC). But the medical doctors couldn’t miss the tell-tale sign of stress—a patch of eczema. I was disqualified despite appeals. Undaunted, I then went to Carnegie Mellon University to study engineering (with the help of parents, student aid, loans and a few extra jobs).
When I had my baby, I learned that the condition was hereditary. She had rashes on her hands, and we greased them with Eucerin each night. She outgrew the condition when she was about 4 years old. About that time, my eczema became easily aggravated.
The dermatologists told me that there was an auto-immune component. I continued to have flare-ups when I had the flu or seasonal viruses. They gave me cortisone shots or prednisone. The results worked great at first, but the side effects of weight gain still plague me.
After college, I worked as an environmental engineer on hazardous waste sites. The hazmat suits were uncomfortable, but the experience was invaluable. Then I worked for AT&T for nearly 25 years.
Since I retired, I work for Stanford Health Care as the Director of Environmental Health and Safety. Each day, I use a regime of cool short showers and moisturizing and weekly bleach baths. When I have flares or infections, I visit my dermatologist.
I am grateful for the National Eczema Association because of the information for new treatments and how to cope with the daily care and emotional stress. I wish I had NEA as a kid. I would have been comforted to know that I wasn’t alone. This is why I donate, and I hope you’ll join me in doing the same.
I live in hope for a cure. I choose to live my life fully. I still dance and sing—with a goal of one musical per year. There’s no need to hide. I wish I could tell every little kid that the flares are temporary. You are not alone, and it is not your fault. And you can do and dream to be anything you want.