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    Posted May 29, 2012 by
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    Vampires don't exist, but porphyria does


    In recent years there has been a rise in the fascination with mythical creatures. I can understand that. I read the Harry Potter series with great interest and zeal. However, starting in 2005, I felt that some portrayals of some of the creatures was not as it should be. Harry Potter was ok, but the obsession for vampires was getting to be too personal. No, I'm not a child of the night, and I don't drink blood, but I do have something that some have coopted as romantic or exciting. I have a rare genetic blood disorder called porphyria. And believe me, it's not romantic, and you don't want the kind of excitement I've had.


    So I began to have unexplained symptoms, such as severe abdominal pain, migraines with auras, and a racing heart. No doctor could figure it out. Some dismissed it as being in my head, others gave gnoses that did not match the intensity of the symptoms (and in isolation of the other symptoms). But it wasn't until I had the worst attack of these symptoms (6 months after having my gallbladder removed) that I decided to do something about it. The surgeon who removed my gallbladder 'threatened' me with exploratory surgery the next time it happened. I say threatened because after struggling to wake up from gallbladder surgery, I woke up in extreme pain. I was given pain meds several times, only to find it hard to wake up. When I finally did, I found myself completely paralyzed, including having lost the ability to speak. Not romantic at all, and not the kind of excitement that most dream about.


    So I set out to do some searching on my own. I got copies of my medical records and sat down to surf the internet. I came across several conditions, but nothing seemed to really fit. I tried a number of combinations of my symptoms, and finally came across the story of someone who has hereditary coproporphyria, or HCP. It was like a big light bulb went on. I was sure this was it. (I know what you're thinking. Self-diagnosis is dangerous. But I went about it the way a scientist would. I documented and looked at the information without emotion - objectively.) This is what I learned. Porphyria is a group of diseases that affect a person's ability to properly make heme - the thing that makes your blood red. It also works in your liver to process different chemicals, including drugs. The type that this woman had also involved skin symptoms. But it's nothing like what any of the vampire stories talk about.


    At the time, I did have a sore in the middle of my cheek that had been there for upwards of six months. And no matter what I did, it didn't seemed to go away. Truthfully, it was really low on my priority list. It was just part of my long list. I could easily cover it up with makeup, but I could not make the abdominal pain go away. The pain in my worst attack is what I described as a very large bear ripping my guts out. It put me in the hospital for three days, requiring pain medication and close monitoring of my electrolytes. Again, not romantic, and I spent most of my time sleeping off my pain meds before I got more only to be woken up so they could take more blood for lab tests or to be put in a big machine to have a CT.


    Long story short, large medical bills later, and loads of frustration, I was able to get to a confirmation of my hunch. I was fortunate to have found a wonderful primary care physician who worked with me. We looked at the whole picture, not just the individual symptoms.


    But once I had my answer, I knew what to do. I would need to make sure that I didn't take any drugs that would make me sick (I had instinctively done that since I was a child), and I needed to make sure I ate enough carbohydrates (low calories can cause an attack), and I would need to put a hat on whenever I went outside during the daytime.


    I knew that, unlike the myth created by Bela Lagosi, my skin does not literally burn up upon exposure to the sun. It takes about 24 hours for something to appear. Most times it looks like an infected acne sore. Once in a while, it's just a small raised sore with clear puss. I can eat garlic, and I would never think of drinking blood. It's gross and would never work.


    But one thing is for sure. Since having been diagnosed, my life has changed. Some people in my life doubted I had it (it is very rare) or that I should just 'get over it' because I'm not having symptoms. I wish I could just be done with it, too. But more than anything, I do not like the association with vampires. It is not glamorous, and it's often painful. But it's real life, so I deal with it. So, no I'm not a vampire, but I do have porphyria.

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