The easiest way to explain Erythropoietic Protoporphyria to an inquiring stranger, is as an allergy to the sun. It's inaccurate, but easy. Most people are familiar with allergies, and it's a simple way to convey the idea that there are medical reasons behind my madness. This explanation more often leads to a comment than additional questions. Personally, the more questions I'm asked about it, the more likely I am to give answers that I later realize may not have been interpreted in the way that I would have liked, darn it.
The most dramatic way to explain EPP is,"the vampire disease". Imagine a creature of darkness slipping shadow to shadow, through a world of beautiful light. Spooky, no?
If you've read any information on the subject, you know that it's technically (long story short)an inherited blood disorder that may effect the liver, and(short story shorter)causes sensitivity to sunlight that can result in severely painful burns, in some instances within a matter of minutes. If you've read more than one article of information, you might have noticed that no two seem to provide identical descriptions of the symptoms, and how, where, when, and sometimes even why, they present themselves. This is because no two cases of EPP are identical. It's also a very rare condition with rare opportunities for research. No doctor knows any more about it than what they've read, and how it's been described by their patient. It's safe to assume that any facts on the matter are collected from the experience of one, or only a few individual cases. No one can tell you what to expect if you have or know someone with EPP, myself included.
What to expect from EPP:
When most people hear,"sensitivity to light", they think of someone who wears sunglasses to prevent headaches, or a person prone to sunburn on hot bright days. These things are normal, and if EPP were normal, you wouldn't be here. When a person with this condition claims to be sensitive to light, they mean precisely that. They are sensitive to it, they feel it more strongly than the average guy, and not in a good way. Even something as trivial as a T.V. or phone screen can be a bother. The degree of sensitivity varies from person to person, and from time to time. Though, I don't remember any time that it's varied enough for the sun to feel anything resembling pleasure on my skin. The sun is hot. Light can be hot too. Too much heat is irritating, and it can lead to burns. It can also damage the skin before it's been burned. It can weaken it to touch and pain, allowing it to be broken and torn like paper, or thickening it like a hide. I say,"before it's been burned", and not,"without being burned", because my skin has only been in these stages preceding acute burns. There are a variety of other ways it may effect the skin, but again it varies. The acute burn seems pretty standard.
An acute burn feels most like the few seconds directly after burning yourself in the kitchen. Except, the seconds carry on for hours and days. There is no pain medication know to help. Relief can be found from cool things, and water, constantly, the whole duration.
The only way to efficiently avoid a burn is clothing, or some other solid material that shields and shades the skin.
To wrap up today's blog before I say too much, or leave something out.. I think this is the simplest way to explain it that applies to everybody. I hope that I've answered at least some of your questions, or provided a tool that helps answer some of the questions presented to you. Thanks for reading!
Your pal,
Sally
