Erythropoietic Protoporphyria (EPP)
I have experienced symptoms of EPP for most of my life without knowing what was causing them. My symptoms gradually got more severe as I got older, and doctors just referred to it as photophobia. I learned from experience to avoid both sunlight and fluorescent lighting as much as possible. People saw me as weird at times because of the way I dressed, covering up as much as possible. I explained my light sensitivity to many people as best as I could, but without a diagnosis, most people didn’t truly understand.
I am a nurse by profession, so I was able to work the night shift for most of my career. This was very helpful to me. It allowed me to dress in a more “normal” fashion. As a child, I remember turning bright red after a short time in the sun, followed shortly by an itchy, burning feeling. Longer periods in the sun would make me feel physically ill. Being a child, I didn’t know that this wasn’t normal.
As I got older, my sensitivity to light increased. It is to the point now, that a few minutes in the sun and any exposed parts of my body literally feel like they are on fire. I’ve learned to deal with that in order to have a more normal life, and not live in isolation. I was fortunate enough to finally find a woman who truly understands and accepts me for who I am. We’ve been happily together for many years now.
My diagnosis of EPP came by accident. Totally unrelated, I was diagnosed with an autoimmune disease, Hashimoto’s, in 2014. My wife was also diagnosed with Hashimoto’s. After a long battle getting that under control, we decided to get genetic testing done. I finally got diagnosed.
Since getting the diagnosis, what I do from day to day hasn’t changed much. I was already doing most of what is recommended due to my symptoms. What has changed is the fact that I can now tell people why I do what I do and dress how I dress and give them a medical reason for it. That has made life much easier, especially since I am working in the daytime now. People seem to better understand the situation when there is a diagnosis involved. At least that has been my experience anyway.