May-June 2008 Briefing

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Dear U.S. Friends: FlakeHQ.com is extremely happy to align itself with Psoriasis Cure Now! in an ongoing campaign to send letters to the United States Congress. Federal funding for psoriasis research has increased over the past year, but the gap between what it is and what it ought to be remains wide. If you click on the button to the right, "Contact Congress NOW," you'll link to a page at Psoriasis Cure Now that makes sending a letter to your Representatives and Senators VERY easy. If you use this link, you will also get heartfelt thanks from BOTH Psoriasis Cure Now and FlakeHQ. (Click here to read FlakeHQ's interview with Psoriasis Cure Now founder, Michael Paranzino.) -Ed

In This Briefing:
Finkelstein's Next Documentary
"Health Talk" The More I Listen, the More I Like It
Enbrel Being Researched for Use by P-Kids
In Flaker Creativity This Update

Finkelstein's Next Documentary

Fred Finkelstein, creator of the documentary My Skin's On Fire (2006) is working on a new documentary about kids with psoriasis — working title, I'm Just Like You. You can view a six minute preview of this new "project-in-process" at Finkelstein's web site: http://www.skinfire.org.

Right now, Fred is wearing his "executive producer" suit, which means he's scrambling for money to produce this next documentary. He was successful at this with My Skin's On Fire and, judging from his 6 minute promotional video for I'm Just Like You, I have no reason to believe he can't do it again.

His first psoriasis documentary, My Skin's On Fire, provided many portraits of what it's like to live with moderate to severe psoriasis and psoriatic arthritis. No one can watch this program and walk away still thinking psoriasis is a "cosmetic condition." Now, the P-kids really deserve similar exposure. I've said often at FlakeHQ that I can't imagine how bad it must be growing up with moderate to severe psoriasis. I know that parents of P-kids suffer even more. Someone once said that the job of parenting is like having another system inside our bodies, like our digestive, respiratory, circulatory and skeletal systems. Parenting means health and wellness, stress and joy, just like those other systems that define what we mean by "living." When a child has a chronic condition like psoriasis, parents feel their pain, not figuratively but concretely. I'm confident Fred will capture all this and more in I'm Just Like You. Please go watch the 6 minute promotional video. Do what you can to help out. Let Fred light another fire under the world for us.

"Health Talk" The More I Listen, the More I Like It

Health Talk is a web-based media channel (though it does radio distribution, too). I knew nothing about it until last October, when I was contacted by a producer to be a prospective guest on "Ross Reynold's Health Talk show about psoriasis." I was the guest on December 6th, last year, and had a wonderful experience. But that's not why I bring "Health Talk" up in this update's Briefing.

I want to pitch the operation as a great way to get current information about "what's going on" in the psoriasis world. I know we have lots of sources, and picking one (or a few) to promote over others may be unfair (perhaps even unwise), but I have been overly impressed with the news emails I've signed up to receive and the in-depth articles and interviews they create and archive on the web.

If you haven't explored "Health Talk," here's a good place to start. http://www2.healthtalk.com/go/psoriasis/news/.

Enbrel Being Researched for Use by P-Kids

Speaking of "Health Talk," got this story from them. Immunex, the manufacturer of Enbrel, has funded the first full-blown study of a biologic for children and teenagers with psoriasis. Surprisingly, the study is suggesting children respond even BETTER than adults to Enbrel — they respond faster, with statistically better results, even on lower dosages.

We may be quite a ways from FDA approval of Enbrel for P-kids, but this study surely moves us in that direction. For the full story, click here.

In Flaker Creativity this Update

Poet Laureate Sherry Sheehan has brought us two poems and I've asked permission to post a third. First is Noise. Years ago, I called facial psoriasis "noise" that gets in the way of communicating with other people. Now Sheehan has taken that concept and made it into something extraordinary. Trying Turmeric was something Sheehan was compelled to write because she is, in fact, trying turmeric (curcumin). As you see when you jump to this poem, it's also illustrated! In this month's mail there are two pieces of correspondence about turmeric (was it something I said?). Sherry has sent us a non-scanning letter (i.e., not a poem) about her trial, and Rae reports on a very successful turmeric trial (so far.) The interesting difference between the two is Sherry is using turmeric topically while Rae is taking it internally (a.k.a. systemically). Maybe we have the makings of a new TV reality episodic: Biggest Clearer. Nah. Finally on Sheehan ... last month her poem Explanation to a Grief Group won a prize and she emailed it to me simply to read because it was not scheduled to appear anywhere else on line. Though the poem has nothing to do with psoriasis, I liked it so much I asked Sherry if I could post it here. Beings that she's our Poet Laureate and kind of under the gun when it comes to making us happy, she said okay. "Explanation to a Grief Group" is a sad but thoughtful poem and one that all of us can relate to directly or indirectly. I hope you enjoy it. You can get to all three new poems by Sherry Sheehan by visiting her page at FlakeHQ.

More chapters of Flake: Confessions of a Psoriatic are posted with updating "postscripts." Either start here at the Table of Contents, or click on a specific newly-updated chapter: