Erythropoietic Protoporphyria is a mouthful of garbled noises that most people don’t recognize as English, or any other language for that matter. The medical community has decided that this 28-letter, 13-syllable vocal exercise is the name of a rare genetic disorder. The professionals that comprise said medical community have been generous enough to provide an acronym dubbed EPP, so you can say that instead. With months of hard training, during which I suffered numerous vocal and oral injuries, I finally managed the pronunciation without a single spitball, so don’t be embarrassed if your mouth trips over itself your first time annunciating Erythropoietic Protoporphyria.
My blog isn’t about EPP. It is more about being alive while experiencing EPP, and trying to understand who and what I am, while throwing in what poor, dry humor I can muster. But, since a basic understanding of EPP is necessary for this, I will try my best to describe how it affects me on a physical level.
If my skin is exposed to direct sunlight for a sustained period of roughly around 3-4 minutes, I experience severe pain in those areas of my skin. For me, there are usually no visible symptoms.
I am often asked, “What does it feel like? Is it like a really bad sunburn?” I have no idea what a sunburn feels like, but from descriptions I can only say, no, it is not like a bad sunburn. Unless, of course, a bad sunburn is analogous to psychologically breaking torture. If that was so, I imagine everyone would be terrified of going to the beach. So, my answer is no, at least I don’t think so.
Imagine a sensitive and raw combination of burning, itching, tingling, and freezing pain on your skin that cannot be soothed or lessened by common medicines. Every sensation on the skin magnifies the pain. Clothes, water, any sort of physical touch is unbearable. Even movement causes indescribable pain. I cannot really describe it because I have never felt it before. I want to scratch it like crazy, but any form of touch makes it so much worse that I immediately regret it. I have only made that mistake a handful of times.
This pain can last for days at a time, and is as intense from the moment it starts until the last day, where it sort of piddles to a mild numbness and hypersensitivity.
There is currently no form of treatment that is accessible in the USA, although I hope that will change soon. I work around the challenges I face by staying indoors during sunny daylight hours or covering up in heavy clothing, a hat, a mask, and gloves. I know that I look like a threat to society when I dress like this, but it’s either instill panic into the local populace or suffer from horrible, prolonged agony. I’m not one much for torture, so I hope your heart is up for a good fright.