Monday, March 30, 2009

National Porphyria Awareness Week



If you watch House (for some reason the writers of that show love porphyria) or if you’ve ever seen The Madness of Kind George, you’ll be familiar with the rare medical condition known as porphyria. But you’d be amazed by how many doctors in this country don’t know about it, or have only the fuzziest idea what it involves or how to deal with it. And that’s a problem, because a leading cause of death among porphyria carriers is doctors and the drugs they prescribe.

March 28-April 4 is National Porphyria Awareness Week, which attempts to raise awareness of porphyria among both the medical community and the population at large. Basically, porphyria is a metabolic disorder, usually hereditary, that interferes in the production of heme. Heme is best known for its presence in hemoglobin, but it’s also a necessary component in other things beside blood and the delivery of oxygen. There are actually eight different forms of porphyria, which differ from each other in significant ways. They’re all called “porphyria” because when certain enzymes involved in the production of heme don’t do their job, the precursors of heme—known as porphyrins—build up in the body. Although porphyrins are normally present in small amounts, when they build up they can cause big problems—the biggest of all being death.

Porphyria is challenging not only because it is deadly and rare, but because its symptoms are so elusive. It is possible for a person to live their entire life with porphyria and never know it. Then, out of the blue, something can happen to provoke a porphyria attack. What does a porphyria attack look like? Depending on the type of porphyria, it can include severe abdominal distress (think the worst kind of stomach flu), a skin rash that results from exposure to the sun, weakness, faintness, peripheral neuropathy, mental confusion, hallucinations, coma, and death.

What can provoke an attack? A low protein diet or fasting. Hormonal fluctuations (menstruation or pregnancy). A viral or bacterial infection. Stress. Chemical exposure (“chemicals” including everything from pesticides to over the counter drugs to chemotherapy).

Thanks to the madness of good ole King George, having porphyria is sometimes seen as something of a stigma. But the truth is, porphyria didn’t make George III crazy; what drove him mad was the arsenic his doctors gave him to treat his porphyria (clever guys, they were treating his attacks with a substance that just gave him more attacks; the man must have had the constitution of an ox to survive with even half his marbles). Yes, having a bad porphyria attack can make porphyria sufferers a little fuzzy for a week or so, but we—usually—come back.

And yes, I said we. I discovered I suffer from porphyria when doing the research for my first Sebastian book. Curious to know more about the disorder that affected the Hanovers, I Googled porphyria and found myself reading a list of the seemingly disparate symptoms that had plagued me since adolescence. This is an example of serendipity at its most precious, since the discovery helped me save the life of one of my daughters when she suffered a horrendous attack after Katrina and the area’s emergency rooms were unimaginable, indescribable nightmares.

So here’s to raising national awareness of porphyria. You can read more about porphyria, and what can be done to help increase awareness of this problem here.

Check it out. You or someone you love might have this condition and not know it.

23 comments:

Steve Malley said...

This is padding at the edges of memory... did you post about this before, or did I read about this elsewhere?

Good to have you posting again, btw!
:-D

cs harris said...

Yes, I think I did post about it another year during P. Awareness Week. I try to bring it up periodically, to do my part to help make people aware of a condition I think is more common than previously assumed--and potentially deadly for those who don't know they have it.

And I hate to admit it, but I've been under the weather the last couple weeks from...a porphyria attack.

liz fenwick said...

Thanks for the info. I knew something but not enough clearly.

Hope you are feeling better.
lx

Barbara Martin said...

Thank you for making others aware. I have a friend who has similar symptoms occasionally and will pass this onto her.

Charles Gramlich said...

I heard about this many many years ago, but you are the first person I've ever met who had it, or at least who knew they had it. I remember reading that some scholars thought it was part of the story behind the development of the vampire myth, since suffers often have very acute sensitivity to the sun and also (supposedly) will occassionally urinate red. I'm glad I was able to learn more about it from you, although I'm very sorry you suffer from it. The stress recently might have been the trigger this time eh?

cs harris said...

Barbara, I hope your friend doesn't have it, but if she does, knowing the provokers is the key.

Charles, yeah, I've heard of the suggested link to vampires, as if mad ole King George doesn't give us a bad enough image problem.

Anonymous said...

Good dispatch and this enter helped me alot in my college assignement. Say thank you you for your information.

Anonymous said...

I recently found out that I have porphyria. Getting information out is key to helping people like me. I am really struggling with it and I wish more people could understand what I am going through because I am starting to feel alienated!!

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Lauren Hamilton said...

I actually have porphyria. I have hcp which is the most rare of them. My mom has it as well and periodically get put in the hospital due to porphyria attack. We have to make sure we have a high carb high sugar diet which is why on house they always show chocolate cake which doesn't actually work ( I tried)

Lauren Hamilton said...

I actually have porphyria. I have hcp which is the most rare of them. My mom has it as well and periodically get put in the hospital due to porphyria attack. We have to make sure we have a high carb high sugar diet which is why on house they always show chocolate cake which doesn't actually work ( I tried)

Lauren Hamilton said...

I actually have porphyria. I have hcp which is the most rare of them. My mom has it as well and periodically get put in the hospital due to porphyria attack. We have to make sure we have a high carb high sugar diet which is why on house they always show chocolate cake which doesn't actually work ( I tried)

Lauren Hamilton said...

I actually have porphyria. I have hcp which is the most rare of them. My mom has it as well and periodically get put in the hospital due to porphyria attack. We have to make sure we have a high carb high sugar diet which is why on house they always show chocolate cake which doesn't actually work ( I tried)

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