September-October 2006 Briefing

Ten Years

When I posted FlakeHQ for the first time in October, 1996, I wasn’t thinking 10 years out; I had no long term plan for the site.  In fact, I didn’t even own the domain name.  (Originally, FlakeHQ was posted as a sub-web on one of my then-employer’s servers.)  I “got the word out” about the site over the first year by including the URL on a note I mailed with books.  The only sales impetus for the book (Flake: Confessions of a Psoriatic) came from a display ad I placed in the National Psoriasis Foundation magazine.  In short, FlakeHQ grew by word of mouth.  Today FlakeHQ receives over 10,000 unique visitors per month.  That’s a number that continues to amaze me.  In the big scheme of “things Web,” it’s not overly impressive.  The National Psoriasis Foundation probably pulls in more visitors than that in a day, and the really popular web sites — eBay, Yahoo!, AOL — draw more visitors than that in an hour. 

Some percentage of my “unique visitors” are misguided web surfers:  people looking for cereal web sites (e.g. “flakes”) or who land here because they searched on something specific (e.g. “warts,” “A&D Ointment”).  These are the people who don’t stay long.  When I zoom in to the statistical behavior that I think defines a real FlakeHQ reader — multiple pages read in a single session, internal links followed, etc. — we are really counting hundreds of visitors per month, not 10,000, probably not even thousands.  Still, “hundreds” is overwhelmingly satisfying.

Without any overt attempt on my part, FlakeHQ pages have increased in visibility on the big search engines (e.g. Google, Yahoo!).  I think this has more to do with longevity than anything else.  At 10 years, FlakeHQ is an “old” World Wide Web site.  I do a substantial amount of hyperlinking to other web sites and I’m told this contributes to search engine references, too, though I’m not entirely sure why. 

Other sites provide links to FlakeHQ and I’m grateful for all of these.  In truth, there are fewer sites doing this today than two years ago.  A part of this has to do with changing policy on the part of some of the “organizational” web sites.  (E.g., “If we link to FlakeHQ we’d have to link to other home-grown web sites — so we won’t.”)  I understand this.  There are certain sites that shouldn’t link to FlakeHQ. 

Where FlakeHQ fits into the universe of sites for/about psoriasis and psoriatics really doesn’t concern me.  I’ve been very happy letting FlakeHQ become what it has become.  I’ve received plenty of email from folks who think laughing about psoriasis is shameful, but much more email from people who appreciate being able to grin for a change.  The “Don’t Say This” page continues to draw huge numbers of hits and I’ve seen parts of it (in one case ALL of it) reproduced on message boards elsewhere. 

What’s in store for FlakeHQ?  Frankly, I couldn’t say, because I STILL don’t have a long-range plan.  There have been plenty of suggestions, many of which I’d love to be able to act upon.  Lots of people have suggested a design face lift, which I’d love to accommodate.  But I’m not a graphic artist and there are a few things about “modern” web design that I don’t like.  (Pages crammed with small type and multiple columns, for example, irk me to no end.)  There’s a lot of “invisible technology” around that make web sites easier to navigate and more versatile — read about TJ Brownfield’s PsoriasisGroup.com, below — and FlakeHQ is beginning to amass enough content to warrant using some database functionality.  When I can figure out how to do it (economically AND practically) I probably WILL do it.  Until then, I’m grateful to be able to just continue.  Speaking of which....

What Happened to July-August?

I had to take some time off for one of life’s defining moments.  Clara and I opened our hearts and home to my disabled mother-in-law.  The learning curve has been steep, the physical requirements daunting, and the changes in our lifestyle and daily routine more than we anticipated.  But the rewards are significant.  She is thriving among people who love her and we are all finally settling into the new routine. 

Your emails of concern when a July-August update didn’t materialize were heartwarming, appreciated and motivating.  They gave me the energy to press forward and ensure this very special update — our 10^th Anniversary Update — happened.

FlakeHQ Interviews: Ed Reiss

I’ve been planning my interview with Ed Reiss for a year and a half.  In fact, I fingered Ed to be my 10^th Anniversary Update interviewee for sentimental reasons.  If it hadn’t been for Ed Reiss, FlakeHQ probably wouldn’t be here today.

At about the same time I was launching FlakeHQ, Ed Reiss was launching the National Psoriasis Foundation web site.  How he found time to help me with my newbie woes, I’ll never know; but I’ll always be grateful!  Ed’s work on the initial Foundation web site was all volunteer.  Since then, the Foundation has revamped the site several times and “gone commercial” with the site we all rely on today.  Meanwhile, Ed moved on to create the Psoriasis Online Toolbox, which remains my favorite research reference point for “things P.”  Along the way, he also created PsorHeads, a web-based message board that had a short but exciting life. 

Since I’ve known him, Ed has been an active member of the National Psoriasis Foundation.  He served on their Board of Trustees, chaired the Research Committee, and has been featured several times in Foundation publications.  He is a recipient of the Beverly Foster Halprin Founders Award — one of the highest honors the Foundation conveys.

To me, personally, Ed Reiss is a role model for what an appropriate life as a psoriatic should entail.  You’ve heard the expression take charge of your psoriasis over and over.  To know Ed Reiss is to know what that means.  He has taught me more about psoriasis than any dermatologist or other doctor I've consulted; he's most thorough in his pursuit of understanding his own symptoms and treatments, and perhaps the most cautious advisor I’ve ever known. 

Conducting this interview was a little like swimming inside the mind of Ed Reiss:  thrilling and awesome.  Read the interview here or via the FlakeHQ Interviews page.

Podcasts and a New High-Tech Web Site for Flakers

Two items new and noteworthy: 

Michael Paranzino’s PsorCureNow.com site now features Podcast interviews, the first one debuted in July and features one of our favorite dermatologists, Dr. Steven Feldman.  In early August, Ivor Caro, MD, Medical Director of Dermatology at Genentech (manufacturers of the biologic drug Raptiva) was featured.  The most recent podcast (at this writing) features Amy Paller, MD, Walter J. Hamlin Professor and Chair of Dermatology, Professor of Pediatrics, Northwestern University Feinberg School of Medicine.  Dr. Paller is one of the best known “pediatric dermatologists” in the country and graces what Paranzino rightfully calls his “back to school Podcast.” 

Podcasts are one of those “new media” technologies layered over the Internet.  I think the name was derived from the file format and growing popularity of downloadable audio programming for Apple iPods — but by now, association with that particular device is a legacy issue for podcasting.  Virtually anyone connected to the Internet with a sound-enabled computer can enjoy podcasts.  Michael’s podcasts are less than an hour long and have, so far, featured news in addition to the interviews and a special “entertainment feature” that has, so far, been music that somehow relates to psoriasis.  Very interesting.  Do yourself a favor and “tune in.”  (P.S. — It’s a great way to spend drive time during a commute to or from work.)

PsoriasisGroup.com is a new web site launched by T. J. Brownfield in my home state of Colorado.  Right now this site is like a “fully loaded luxury automobile” sitting in the showroom and waiting for riders.  As far as I know, it is the only flaker site set up to accommodate user blogs, messaging, chat, photo sharing, surveys, profiles and plenty of room for future editorial content.  Hmmmm.  Yes.  It just occurred to me.  This could become that flaker dating site so many of you have asked for over the years!  (I’m speaking technologically.  What it becomes in actuality is up to T.J.)  PsoriasisGroup.com has been added to the Other Places page at FlakeHQ. 

Two New Articles

Fred Finkelstein, Writer-Producer-Director-Narrator of the documentary video, My Skin’s On Fire, has provided his reflections upon taking his film “on the road.”  Fred is an amazing fellow who continues to earn my respect and admiration.  His introspective essay does not disappoint.  Click here to go straight to the essay, or visit the Articles page.

I finally finished my article about my post-Raptiva rebound:  Rebound -or- On Flaking Again.  Though I may be preaching to the choir, here, “writing through” these miserable times is medicine in itself.  I hope you can find something in my “sock drawer piece” to grin about.

New in Flaker Creativity

FlakeHQ Poet Laureate Sherry S. gives us Snow Globe ... Rodger Jacobs gives us Trace Goes Shopping ... and an old friend, Dena Feldman, is back with a poem, The Truth Is.  (Dena’s personal essay, Bear was posted here in January, 2001, and continues to be an oft-read piece.  It remains, for me, one of the most effective essays written about “coming of age” as a flaker.  If it’s been awhile since you read it, now would be a good time to read it again.)  All of these pieces are also available through the Flaker Creativity page (Feldman's "Bear," however, is listed on the Articles page).

-Ed Dewke, August 31, 2006

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