(February, 1999)

Dearth of Books About P
from Christine M.

Hi Ed: Like John from the Philippines, I have never met anyone with P. I feel alone with my P and have no one to really talk to regarding "it." I'm currently on Methotrexate and not liking it much. I have severe P without the drug and moderate P with the drug.

I would love to talk to someone who knows how I feel and knows what I go through in a day. I have read every book I could get my hands on and let me tell you, that wasn't easy. Local book stores and libraries did not have good books on the subject or the book was printed in the late 60's or early 70's.

I like the idea of having chat sessions with other flakers. Even if it was a one-time-only arrangement. I would enjoy the life stories of others, to learn from them and maybe make my life more liveable, to know there are others out there who suffer as I do.

Thanks for you time, -Christine M.

*****

Ed's Response: Hi, Christine. Glad you spoke out and welcome to our hangout. Reply back to me [CLICK HERE] and let me know if I can share your e-mail address with John in Manila. [See link at bottom to re-read about John from last month's mail.]

And while I'm at it, any of the rest of you who want your e-mail address shared with other Flakers—and John, I forgot to point this out to you!—let me remind you, our friend Dave Keats has set up the "Psoriasis Contact Page" expressly for e-mail networking among flakers. Go to "Other Places" here and scroll down to find the link.

Back to you Christine ... it irks me that you have to endure a Methotrexate regimen just to "stay moderate" re: flaking. I don't blame you one bit for not liking it. I assume you exhausted the topical and light-therapy regimens with unsatisfactory results?

You're the second person who expressed an interest in a special chat session for/with John from the Philippines. An ICQ number might be a better bet. (To learn more about ICQ—which isn't an acronym, by the way, but an "onomatopoietic moniker" intended to sound like "I seek you"—go to http://www.mirabilis.com. (Be careful how you type the URL, by the way. I mistyped it once and ended up at an engagingly raunchy porn site ... took me forever to find my way out!) ICQ is free, not too difficult to use.... It is, in fact, how John I. found me. I figure I would need about thirty interested parties to mount a memorable special event chat. (Our chat would use ‘Internet Relay Chat,' or IRC, an old old old but tried-and-true technology for real-time type-talking among people logged on to the same place at the same time. All you AOLers may recognize the experience as being similar to AOL's "chat rooms".)

I think the dearth of books about Psoriasis can be attributed to two things. One, aside from radical or fringe therapy approaches, there simply isn't much to write about. An honest derm will tell you most "how tos" aren't worth more than an essay, because none work too well or too predictably. Two, there being statistically somewhere between two and three of us per 100 people (in the U.S. population at least), and some unknown but probably high percentage of us don't read about our disease, we're not talking about a tremendously profitable publishing undertaking. We are a Niche (with a capital ‘N') that's hard to target. That's why any author, product manufacturer, or snake oil salesman yearns to win the National Psoriasis Foundation's affection. They won't sell their mailing list (I know) so the best way to get the word out to the flaking population is to compel them to say something nice about you/it/whatever. And—for this we should thank our lucky stars—NPF is very particular in dispensing their affections and their heralding, which is why we can and should trust them, pay attention to them and, most importantly, support them.

When I was diagnosed diabetic about two years ago, I turned immediately to the American Diabetes Association and quickly found their megabook titled Complete Guide to Diabetes. I sucked this up as though through a straw and thought, all the while, "Why the heck hasn't NPF published something similar?" Then it occurred to me. There's what? ten times more diabetics than psoriatics? twenty times more? Plus, diabetes can kill you—something P doesn't normally do. Surely the larger population of more desperate people made ADA's publishing Complete Guide a no brainer.

But stay tuned, Christine. I'm counting on at least a little more P literature forthcoming but it won't be an encyclopedia of regimens or a statistical report on results. It will be considerably more "down to earth" than that. ((;-) Matter of fact, you may have just written a piece of it! -Ed

"In The Dark in Manila" from John from the Philippines.

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