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.
Saturday, March 28, 2009
Quack!
Steve and I started feeding the birds and squirrels back in those ugly, traumatic days after Katrina, when the hurricane’s winds had stripped the vegetation from the area’s shrubs and trees, and the receding floodwaters had left neighborhood gardens brown and dead. Now, Steve throws out big scoopfuls of seed and nuts and cracked corn every morning before he leaves for work. Our garden is an oasis of birdsong played out against the splash of the fountains (and the occasional “Meow! I want one of those!” from our gang of fascinated, ever-hopeful inside cats).
But this is the first time we’ve looked out the window to find ducks in our garden. I guess it shouldn’t have come as a surprise, given that we live only a couple hundred feet from a canal. But it was still enough of a treat to send me scrambling for my camera.
Bye, guys! Ya’all come back now, you hear?
Wednesday, March 25, 2009
Hey! I’m a Rita Finalist!
Today, Romance Writers of America (RWA) announced the finalists for their 2009 RITA awards for romance fiction published in 2008. These are the most prestigious awards in the romance publishing industry. Back when I was writing romances as Candice Proctor, I finaled for my second book, The Bequest. But I’ve always been notoriously bad about remembering to enter the dang thing. Last summer, my editor said, “I can’t believe you’ve never entered your Sebastian books in the RTA!” So I got my butt in gear and entered Where Serpents Sleep in the category “Novel with Strong Romantic Elements.” And guess what? I finaled!
Winners will be anounced 18 July, at the RWS National Conference in Washington, D.C. Yes, it would be nice to win, but it’s true what they say: just being a finalist is a great honor.
Monday, March 16, 2009
Farewell, my friend
Nick, our male tuxedo cat, died last night from kidney failure. He was only eight years old. He should have had many more years of getting pets, of eating tuna and watching birds fly.
We nicknamed him Velcro because he never got enough attention. He’d come sit next to you, and if you were busy doing something and tried to ignore him, he’d reach out one of his snowy white paws and tap you on the shoulder. Tap, tap; pet me, pet me.
I keep thinking maybe I could have done something differently that would have saved him. A different vet, a different treatment. He was too young to die.
He will be missed.
Sunday, March 08, 2009
It Never Rains But It Pours
I’ve been MIA for a while, having injured my eye while cleaning up the overgrown garden at my mother’s old house. Since I’ve always been almost blind in my right eye, and I injured my left eye, life has not been easy. The eye is slowly mending, but I still can’t see very well, and I now have TWO edited manuscripts demanding my immediate attention.
That’s right: the manuscript of the thriller I sent in to my editor last October has only just been returned to me with her revision suggestions and line edits, after five months. The editor of my next Sebastian mystery (which I turned in at Mardi Gras), has also just returned the manuscript to me for revisions. After five days. One is due for release this coming October, the other this coming November, which means both editors want the revisions done ASAP.
Yes, I know I’m lucky to have even one book contract in this economic climate, let alone two. But still...
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That’s right: the manuscript of the thriller I sent in to my editor last October has only just been returned to me with her revision suggestions and line edits, after five months. The editor of my next Sebastian mystery (which I turned in at Mardi Gras), has also just returned the manuscript to me for revisions. After five days. One is due for release this coming October, the other this coming November, which means both editors want the revisions done ASAP.
Yes, I know I’m lucky to have even one book contract in this economic climate, let alone two. But still...
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