Cutaneous Porphyria and the Vampire Myth

I have a confession to make. I’ve read the “Twilight” saga. Yes, even the “Eclipse” novella about the newborn vampire army. I’ve watched all of “Buffy the Vampire Slayer,” as well as the spinoff series, “Angel,” and also “True Blood.” When pop culture flipped the vampire trope from villainous to sexy, I was here for it.

I love folklore and fantasy. And sure, I enjoy stories about vampires. But I have a whole new perspective on the vampire myth now that I’m part of the porphyria community.

There are eight subtypes of porphyria, and many present with painful skin photosensitivity. (To be clear, I have acute intermittent porphyria, a subtype that does not affect my skin.)

Erythropoietic protoporphyria (EPP) is a type of cutaneous porphyria that is usually identified in early childhood. A typical reaction starts with a burning, stinging sensation and moves into horrific pain with severe burning, swelling, and redness if a patient doesn’t seek the safety of shade or darkness.

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People living with EPP experience phototoxicity, or an abnormal skin reaction to sunlight. To prevent severe pain and symptoms, they avoid the sun, which is why cutaneous porphyria is frequently cited as a real-life origin of the vampire myth. Kristen Wheeden, executive director of the American Porphyria Foundation (APF), confirmed that inquiries about vampires start rolling in around this time every year.

“This feeds into the stigma of this disease, a stereotype that is a portion of the full picture,” Kristen told me. Patients are real, and this disease is awful, but vampires are not real. “To compare this disease could likely lead to physicians questioning the disease’s validity. As a dermatologist said to my young son prior to diagnosis, ‘Dermatology is a visual science, and there is nothing to see here.’”

Speculation on the origin of myth can be interesting. But comparing something well-known, like vampires, with a rare disease most have never heard of can lead to a lot of assumptions and misinformation. Clearly, people with EPP don’t drink blood or glitter like granite in the sun. In fact, pale skin and sun avoidance may be where the similarities end.

It’s safe to say that not everyone living with EPP appreciates the vampire association, but I recently spoke to two people who haven’t let misunderstandings about their disease get them down.

Ginger Zona has managed EPP nearly her entire life, having been diagnosed at age 2 along with her brother, who was 18 at the time. I asked how the disease affects her life, and she acknowledged the challenges of avoiding sun exposure. “Every move I make has to be preplanned,” she explained.

She understood the vampire myth and its historic link to people with cutaneous porphyria. “Society is not very accepting of people they perceive as different,” she said. “I think this is just as true today as it was back then.” She is concerned about the spread of misinformation that minimizes the disease.

Craig Leppert leads the APF’s Shadow Jumpers program, which helps kids and their families learn about life with EPP. He acknowledges that living with the disease is hard. “It’s an invisible disorder that challenges you. It is at times isolating, defeating, painful, and humbling. I’d rather break a bone than go through some of the hard reactions I’ve had with the sun in the past.”

He understood why people make the vampire association, and has used it in the past as “short form” for explaining EPP. “In the summer when I’m covered head to toe like its heavy winter, should I try to explain the complex science and terminology of EPP to a bystander who is, understandably, looking at me funny?” he asked. “Or can I use short form and easy references to get us both on the same page and go about my day?”

As someone who makes jokes about my own rare disease, I can greatly appreciate Craig’s sentiments and ability to connect with others on something so obscure. During our brief email exchange, he talked a lot about acceptance and mental health, about how he owns his illness and doesn’t let EPP define him.

“I wish people could see how eccentric, different, and memorable EPP makes you in a world today that is craving authenticity,” he said. “We don’t need allies in the fight against the term ‘vampire,’ we need allies in the shade.”

Kristen and the helpful folks at the APF are always happy to answer questions, but they’re no experts on vampirism. For more about those mythical creatures, I recommend the latest novel in the “Twilight” saga — it’s written from Edward Cullen’s perspective.

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Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to porphyria.