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November-December 2005 Briefing
My Skin's On Fire, One of a Kind Documentary
I've seen it and you should, too. Produced, directed and narrated by Fred Finkelstein, who lives in Oakland, California, there really has been nothing like it in film or video before. My Skin's On Fire runs just over an hour and consists mostly of interviews with flakers and doctors. Finkelstein frames and punctuates his heavy interview format with memoir-like recollections of his own psoriatic history. Genentech — the manufacturer of Raptiva — is the film's primary sponsor (though others, including the National Psoriasis Foundation contributed). Genentech defines the film as, "messages of hope and empowerment to those affected by psoriasis." I suppose that's apt enough. Some of the interviewees, in some gut-wrenching moments, talk about pain and stigma and loneliness — a lot of loneliness — and yet the message of the whole seems to be the survivability of all that and hope for the future. I asked myself, after my first viewing of the film, Would I show this to someone who has just been diagnosed with psoriasis? My answer is probably "no," because most people who are just diagnosed can't know — nor can their doctors — how bad it will become for them and this film could be unnecessarily traumatizing. Most of the flakers interviewed in the film are people who have lived with severe psoriasis for a long time. They are reflecting back on their misery. In this respect it is a film about veterans of psoriasis, and I think it's most appropriately viewed by other veterans.
My Skin's On Fire is an important work. For the time being, you can receive a free DVD of the film by enrolling in BeyondPsoriasis.com, a psoriasis support site run by Genentech (membership is free). You can learn more about the film, read some Q&A with the Fred Finkelstein, by visiting the site.
To anyone who watches My Skin's On Fire and would care to comment: Please email me your thoughts about the film.
Organic Hope, makers of Kalawalla, writes to FlakeHQ
Of unusual interest in this month’s mail is correspondence from Jorge Mendoza, the President of Organic Hope, manufacturer of Kalawalla. Of all the OTC products that get mentioned at FlakeHQ, Kalawalla has probably stirred the most interest and comment in 2005. (Search on Kalawalla from the home page to review correspondence.) If you’ve been thinking about trying this amazing fern extract from Honduras, you really want to read President of Organic Hope Writes About Kalawalla.
FlakeHQ Interviews Online Community Pioneer Ed Anderson
Ed Anderson is the proprietor of the Psoriasis Hall of PShame and the Skin Page, and for many years he was the default “master at arms” of the newsgroup alt.support.skin-diseases.psoriasis which many consider our first widely-populated online community. In more than a few ways, all of the web sites and forums for psoriatics that have emerged since 1995 owe something to Ed Anderson because in those early years (’95-’97) when people with P turned to the Internet for information, hope and companionship, Ed’s work was what we discovered that was different from commercial product sites or heavy medical sites. Ed showed many of us — me included — what was possible.
He wasn’t alone in his pioneering. Some of his cohorts on the frontier will be interviewed in future updates of FlakeHQ. But there could be no better place to start than my most enjoyable exchange with Ed Anderson. Click here to jump straight to the interview, or go to FlakeHQ Interviews page.
The Sale of Amevive
You've probably heard: Biogen Idec, manufacturers of the biologic drug Amevive, are trying to sell their "rights" to manufacture/sell the drug to some other company. We shouldn't be surprised by this — and people who are taking Amevive should not be overly concerned about the continuing availability of the drug.
With the continuing stream of biologic drugs being tested, approved and marketed for psoriasis, shake-up and fall-out is to be expected. If any one of them were a 100% answer to flaking we'd not have so many of them to try. Here is Q&A about the intention to sell.
Flake Book Returning Online
Flake: Confessions of a Psoriatic was written in 1995 and published in 1996. It started as a diary. When I first started flaking (scalp, 1989) I was merely irritated and embarrassed; but, in 1991, when I was actually diagnosed with P, I became very depressed. My diary was my way to cope. I could laugh at myself in the diary. I pulled selected pieces out of the diary to make the book. At the time I’d tried topicals and light therapy. Nothing else. I was afraid to try systemics (which at the time meant methotrexate, cyclosporine and Tegison) and the biologics didn’t exist. As a community, we had reason to believe P was an immune system problem, but the details were blurry. Since that time, everything has changed.
This meant that by the beginning of 2005, Flake had become an untimely, fading snapshot of what life had been like with psoriasis. I felt it unfair to continue selling the book when it did not mention most of the important but new things flakers can do to improve their conditions. At the end of April, 2005, I took the book off the market.
On the other hand, the stories from Flake: Confessions may still inform and amuse and I’ve heard from dozens of people who say those stories have hit home for them.
So, in 2006 I’m going to reprint Flake: Confessions, in serialization, here at FlakeHQ.com, but I’m going to try to update it as I go. By “update” I mean two things:
1. There are hundreds of correspondence exchanges in the archives of FlakeHQ.com that complement and enrich the stories in Flake: Confessions and I will link to many of these in the on-line serialization. It won’t just be “Ed’s experience” anymore.
2. Where my treatment experiences “end” in Flake: Confessions, I will update them through new narrative and/or links to other articles at FlakeHQ and elsewhere.
Can’t say with confidence at this point that the serialization will start in January, 2006; but it will happen sometime in the first half of the year.Happy Holidays! -Ed