Porphyria: Truth & Fiction

Alright. I know I have, and you also might have seen a few articles swimming around the net comparing porphyria to vampires and here’s my skivvy on the whole thing, being a case of porphyria myself.

Why am I writing this?

Because Duo, who has been surfing around at House Eclipse, found an article here about porphyria. I’ve also seen articles in books about vampires (mostly because I search them out to check their accuracy). Even the X-files has compared porphyria to vampires. I figured I might as well write something up. And here’s the drama disclaimer: even though I’m going to be talking of painful symptoms I’ve suffered, I’m not fishing for sympathy. I’m only explaining my expertise on the subject. If anything, I think I’m very lucky in that I have a very mild and non-lethal form of porphyria.

What is Porphyria?

Porphyria is a set of metabolic disorders caused by a high amount of chemicals called porphyrins in the blood. These chemicals do various things as harsh as mental disorders and organ failure, or as mild as an itching sensation. Each branch of porphyria can have a different cause: alcohol abuse, Agent Orange, or mine is a genetically inherited bad enzyme that’s used in the production of blood. The onset also varies from each type of porphyria and also on a case by case basis. Some happen during puberty, some during old age, mine I’ve had since very early childhood.

What does your porphyria do?

My particular form, erythropoetic protoporphyria or EPP, is one of the mildest forms of porphyria. It’s not lethal outside of a predisposition for liver failure thanks to the overwork of processing the prophyrins in my blood. I don’t have the same issues as other forms of porphyria do: that being mental disorders or painful and potentially lethal allergies to things like blueberries, medications, and cigarette smoke. The biggest issue for an EPP patient is a painful reaction to sunlight. Sometimes people ask what it feels like, and one of the closest explanations I can give is something between the feeling of when you come inside a warm room after being outside in the snow for a long time, and burning alive. Not fun. However, I don’t have any visible responses unless I have been exposed to sunlight for about 3 days straight, in which case I swell up and get purple lesions on my skin. Porphyria is named such for the purple lesions, porph is the Greek word for purple. Over time I’ve learned to listen to my body and know where my limits are in terms of exposure, so I can still get out and live as much life as possible and there is plenty I can do when I am outside to protect myself. The wavelengths that are a problem for EPP folks are within the visible spectrum, specifically the color orange and purple. Because of this, sunscreens aren’t helpful as they only block UVB and smaller amounts of UVA, but no visible light (because if they blocked visible, you wouldn’t be able to see your skin). I keep covered, and stay in the shade, on the worst days using gloves, hats, and a face mask from Solumbra, with a parasol to keep myself in my portable shade. For the average partly cloudy day, I wear just long sleeves, gloves, and the parasol. So far, this has been very effective in me being active in the summer, because otherwise I wouldn’t be. As stated earlier, once I have had too much sunlight, the pain is intense and I’m no good for days or even weeks depending on how bad the reaction was.

Why do people compare porphyria to vampires?

I’d say the obvious one being the sun sensitivity, but there are other qualities one could compare. It’s a blood disorder for one, and so some treatments are blood transfusions. Also antioxidants such as garlic help to encourage new blood production, and for porphyria like EPP, which are caused because of faulty blood production, more blood = more porphyrins = worse reaction. Some other forms of porphyria have elongated canines, and the porphyrins build up in the teeth, creating a brownish color that could be mistaken for bloody teeth. However, that’s where the comparisons stop. I suffer from EPP, but I am NOT a vampire. I repeat. I am NOT a vampire. I do not feel the need to suck blood or energy from anything living. And whatever other myths there are, don’t hold either. I used to wear a cross all the time, a little garlic doesn’t hurt (and is quite tasty), I don’t have any sort of super strength (though I’m not bad for a girl of my stature), I only wear black because it tends to have a tighter thread count and doesn’t reflect light up to my face, and I don’t particularly have a affinity for techno. =)

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