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From Sun-Worshipper to Vampire: Embracing Life with Porphyria

Once upon a time, not so very long ago, there was a beautiful princes named Roxy Tart who loved spending time in the sun. She would tan, bask, photosynthesize, and just generally be a sun-worshipping goddess. Then a few years ago, after a spectacular day in the pool, the day this photo was taken in fact, something happened. She discovered she had Porphyria.

roxy tart laying in a pool in the sun

The Shocking Revelation in the Shower

After spending all day at a fabulous Vegas pool with my friends, we went back to our hotel room, and I was taking a shower when Katie looked at me and goes, “Dude, I think there’s something wrong with you.” I looked down, and I am covered in red spots! We thought, Okay, I’m having an allergic reaction to something at the hotel, maybe detergent or something like that. But the next morning, those red spots had turned purple, and they itched, and life was all bad.

Unraveling the Mystery: The Journey to a Diagnosis

Fast forward a bit… with a lot of experimentation, talking to a doctor, and of course consulting my mom, I learned I’m allergic to the sun, and that there’s a name for this rare disease, Porphyria Cutanea Tarda, more commonly known as the Vampire Disease. It can happen to anyone, but it doesn’t tend to present until you’re an adult over the age of 30. And the number one reason that people get it… well, it’s genetic.

And of course, my mom has it too. She’s been slightly allergic to the sun my entire adult life (she’s also allergic to garlic, who knew the two were connected, lol) but did I know it was genetic? No, I did not. Did I have any idea that I was going to be allergic to the sun? No, I did not. And has it changed my life basically completely? Yes, it has.

Unmasking the Vampire’s Nemesis: What is Porphyria Cutanea Tarda?

Now, let’s sink our teeth into the juicy details of what makes porphyria cutanea tarda (PCT) tick. It’s a rare and quirky disorder that sounds like it was named by a group of confused vampires.

You see, PCT is all about sun sensitivity. It’s like your skin decided to play hide-and-seek with the sun, and it didn’t end well. Picture this: painful, blistering skin lesions that pop up on the parts of your body that dared to embrace sunlight. Your skin becomes as delicate as a soap bubble at a children’s party, ready to pop at the slightest touch.

But here’s the twist: PCT isn’t just a diva-like reaction to the sun; it’s got a liver connection. Some folks have a genetic predisposition to this disorder, and it teams up with their liver to create all sorts of drama.

Now, the symptoms of PCT? They’re like a wild card in a deck of symptoms. Everyone’s hand is different. Expect anything from skin that throws a fit when the sun’s around, to abdominal pain, nausea, bone deterioration, and even some wacky neurological symptoms like anxiety, restlessness, and the occasional unexpected convulsion.

But wait, there’s more! In the liver department, PCT can be quite the troublemaker. Think iron buildup (hepatic siderosis), fatty deposits (steatosis), and a bit of liver inflammation (portal triaditis). It might even throw a party with thickening and scarring around the portal vein (periportal fibrosis).

And to top it all off, some folks with PCT might be at a higher risk of developing liver scarring (cirrhosis) or the grand finale, liver cancer, known as hepatocellular carcinoma. Talk about drama queens, right?

So there you have it, folks – PCT, the sun-shy condition that turns your skin into a diva and your liver into a party animal. But don’t worry, we’ll navigate this wild ride with humor and a touch of vampire flair!

Navigating the World as a Sun-Shy Vampire

Now that I’ve embraced my inner vampire, I’ve had to make some significant lifestyle changes. Gone are the days of frolicking in the sun without a care in the world. Instead, I’ve become a pro at finding shade and rocking stylish sun-protective gear. I’m basically the ninja of sun avoidance.

Living with porphyria has encouraged me to explore new indoor hobbies and adventures. From museum hopping to becoming a connoisseur of the finest restaurants, I’ve discovered a whole world of sun-free fun. But there are also some pitfalls, like missing out on beach vacations and outdoor summer concerts.

roxy tart out at night living with porphyria

The Glorious Nightlife of a Sun-Allergic Vampire

One thing I’ve learned on this sun-avoidance journey is that the night has become my best friend. It’s like discovering a secret world that only comes alive when the sun bids adieu. You see, when you’re sun-allergic, the night isn’t just for sleeping anymore. It’s a realm of endless possibilities, a playground for my inner night owl.

Nighttime Strolls: Remember those leisurely daytime walks? Well, they’ve got nothing on the charm of nighttime strolls. The air is cooler, the streets are quieter, and the moonlight bathes everything in a gentle, ethereal glow. It’s like taking a step into a dream world, and I’ve become quite the connoisseur of these moonlit promenades.

Moonlit Picnics: Who needs a sunny park when you can have a moonlit picnic? Grab a blanket, some scrumptious snacks, and head to your favorite spot under the stars. It’s romantic, it’s serene, and it’s all ours. The sun might have the daytime, but the night is where the real magic happens.

Late-Night Escapades: When everyone else is winding down, my adventures are just beginning. Late-night escapades have become a thrilling part of my life. From impromptu midnight drives to exploring the city’s hidden gems, the night is a canvas waiting for my brushstroke of excitement. Plus, I’ve got a legitimate excuse for being a night owl now, right? It’s not insomnia; it’s embracing the nocturnal lifestyle!

So, while I might have bid farewell to sunny afternoons, I’ve gladly welcomed the enchantment of the night. It’s a world where the stars are my companions, the moon is my guiding light, and the shadows hold secrets waiting to be discovered. It’s a world where being a sun-allergic vampire isn’t a curse but a ticket to a different kind of adventure.

roxy tart out at night at disneyland living with porphyria

The Blood Connection: Porphyria and the Vampire Myth

So, where did the whole vampire legend come from? Well, like many legendary tales, it’s rooted partly in reality. Enter porphyria, a blood disorder that’s been lurking among us for centuries. It became quite the “trend” among the nobility and royalty in Eastern Europe. Porphyria is an inherited blood disorder that makes your body produce less heme, a crucial part of hemoglobin (that’s the protein in red blood cells that ferry oxygen around your body).

Unmasking the Porphyria Symptoms That Inspired Vampires

Now, let’s break down the symptoms that could easily inspire vampire legends:

1. Sensitivity to Sunlight: People with porphyria are like sun’s worst enemies. Exposure leads to facial disfigurement, skin that looks as if it’s seen too many horror movies, and hair that’s embraced the darkness. Think of it as the ultimate sunburn.

2. Fang-tastic Teeth: In addition to their sun issues, repeated attacks of porphyria can make gums recede, exposing teeth that might look eerily like fangs. Vampire vibes, anyone?

3. Blood Drinking: Here’s where things get a bit twisted. Because the urine of porphyria sufferers turns a dark shade of red, folklore decided they must be indulging in some bloodsucking. Well, some doctors even recommended that these patients sip on animal blood to compensate for their red blood cell woes. But let’s clarify – it’s more likely that they were just out and about at night (sun sensitivity, remember?), and their fang-like teeth led to some imaginative folk tales.

4. Garlic Aversion: Ah, garlic, the sworn enemy of vampires. In the case of porphyria, the sulfur content in garlic can trigger severe pain. It’s like their kryptonite. So, naturally, they’d steer clear of the pungent stuff.

5. Mirror, Mirror, Not on the Wall: In vampire lore, mirrors and vampires have a complicated relationship. Porphyria doesn’t help in this department either. As the disorder progresses, it can wreak havoc on the face, leading to the collapse of facial structures. Mirrors became a horror show porphyria patients preferred to avoid.

6. Crucifix Conundrum: During the Spanish Inquisition, supposedly some 600 “vampires” found themselves on the wrong side of the stake. But here’s the twist – some of them were innocent porphyria sufferers. You see, porphyria packs a punch in the pain and disturbance department, and understandably, these folks feared Christian zealots.

roxy tart out at night time spooky event living with porphyria

The Vampiric Truth Behind the Myths

So there you have it, the juicy details of how porphyria and vampire myths are intertwined. From sunlight aversion to garlic fears, the connections are both eerie and oddly amusing. While porphyria is far from turning you into an immortal bloodsucker, it does give you a unique connection to these age-old legends. Who knew that a rare blood disorder could have such a spooky backstory?

Embrace Your Inner Vampire, and Let’s Conquer the Night Together”

In the grand tapestry of life, porphyria may have handed me a unique card, but I’ve chosen to play it with flair. I’ve decided to embrace my unique condition and share my porphyria journey with the world. It’s not just about my own experiences; it’s about shedding light on a condition that often hides in the shadows.

roxy tart out at night living with porphyria looking glamorous

Embracing Porphyria and the Power of Community

From raising awareness to connecting with fellow “vampires” (yes, we’ve got a sense of humor about it), I’ve discovered that this challenging journey is not one I have to traverse alone. There’s an incredible sense of community out there, where we swap stories, share tips for avoiding the sun’s sneaky rays, and find strength in our shared experiences.

To All My Fellow Sun-Allergic Souls

So, to all my fellow sun-allergic souls and those who are simply curious about the vampire-like world of porphyria, I say this: Embrace your inner vampire! Let’s be the night’s champions, the moon’s loyal companions, and the guardians of those precious shadows. We’ve found beauty and adventure in the darkness, and it’s a journey worth taking.

roxy tart out at night at diseny world epcot living with porphyria

In Conclusion: The Sun May Set, But Our Spirits Rise

In conclusion, life with porphyria has taught me to appreciate the quieter, cooler moments that the night offers. It’s a reminder that even in the face of challenges, there’s always a silver lining – or in our case, a silver moonbeam. Together, we’ll conquer the night, celebrate our uniqueness, and prove that the sun may set, but our spirits will always rise.

So, here’s to embracing our inner vampires, to finding joy in moonlit picnics and late-night escapades, and to sharing our porphyria stories with the world. Together, we’re a community that thrives in the darkness, and that’s something to celebrate.

**An edit to this post: I was recently gifted a sunshade from Kazzary and it is a wonder my friends! With UV Protection that blocks 98% from the harmful sun rays, I feel safe being outside during the day. It’s convenient, portable, easy to set up (and comes in really bright colors! lol). If you’re looking for any kind of sunshade for the beach, yard, etc. I HIGHLY suggest this one. I honestly feel like it’s gonna change my daytime living, and allow me to go to more events with my friends.

Digging Deeper: Sources of Inspiration

I want to tip my hat to the sources that have shed light on the fascinating world of porphyria and its connection to vampire myths.

First off, a big shout-out to Queen’s University Gazette for their insightful article on the origins of vampire myths, which have a real connection to porphyria. You can dive deeper into this intriguing topic by checking out their article here.

And for those seeking more detailed information about porphyria cutanea tarda, a rare but captivating condition, the National Organization for Rare Disorders (NORD) offers a wealth of knowledge. You can explore their comprehensive resources on porphyria cutanea tarda right here.

These sources have been instrumental in unraveling the mysteries of porphyria and its ties to vampire myths. So, if you’re hungry for more information, do check them out!

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