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March-April 2006 Briefing
The Psoriasis Cure Now! organization distributed an announcement in late February about the disappointing allocations made by the National Institutes of Health for psoriasis research.
“From Fiscal Year 1995 through FY 2005, NIH research funding for other diseases DOUBLED, while psoriasis research at NIH’s skin institute DROPPED 22%. NIH-wide research on psoriasis was just $6 million in 2005, less than $1 per patient, out of NIH’s $28.6 billion budget, and the federal government’s $2.5 trillion budget.”
Organization founder Michael Paranzino called for people with psoriasis to send a letter to their lawmakers urging more funding for P research. To make that an easy thing to do, a template letter is available at the organization’s web site along with some slick automation that allows you to enter your zip code and your name and — SHAZAM! — letters are dispatched to your Senators and Representatives. (You even have the option of customizing the template letter with thoughts of your own.) Visit http://www.psorcurenow.org to take advantage of this streamlined solution to making your voice heard.
Or so is the conclusion reached by some when studying some of Franklin’s more obscure correspondence. Psoriasis Cure Now! used this discovery to good effect in Washington, D.C., last month where they even hired an actor/Franklin look alike, in costume, to get attention on Capitol Hill.
Dubious? Decide for yourself, click here to read one of Franklin’s journal entries. (Link courtesy Psoriasis Cure Now!)
“Dovobet” has earned considerable space in the FlakeHQ archives. It is a corticosteroid (betamethasone dipropionate) and a vitamin D derivative (calcipotriene) combination that has been sold for some time in Europe.
Well, the combo is now approved for sale in the U.S. as Taclonex (marketed here by Warner Chilcott).
Shortly after the introduction of Dovonex (calcipotriene) in the U.S. in the mid-1990s, lots of flakers tried the topical — lots of derms were pushing it as an alternative to skin-thinning topical steroids. And lots of us learned that Dovonex, by itself, wasn’t much help. A few derms — maybe under European influence? — decided to try using Dovonex with a mix of corticosteroid, usually betamethasone dipropionate (available in the U.S. as a generic or as Diprolene). The thinking was that even if Dovonex allowed a reduction in the use of the strong corticosteroid — while preserving the same positive results — it would be better than relying totally on the steroid. (Note: The more skin area to be treated, the worse the potential side-effects of topical corticosteroids.) Combined use of Dovonex and Diprolene (or some other corticosteroid) blossomed. Some flakers were told to mix dabs of both in the palms of their hands and then apply them together. Some were told to use one in the a.m. and the other in the p.m. Others were told to apply one on top of the other. The drawback was buying and hassling with two goops instead of one. Meanwhile, our brethren across the pond had it easy.
Thankfully — and at last — the injustice has been remedied. Say “hello” to Taclonex.
He was on the cover of the Foundation’s Advance magazine issue-before-last. You’ve been reading about his documentary film, My Skin’s On Fire, here and probably elsewhere. Perhaps you attended the NYC debut gala sponsored by Genentech (also the film’s principle sponsor). And maybe you’ve already been to www.beyondpsoriasis.com and ordered a free copy of the DVD. Fred Finkelstein is the soft-spoken flaker who wrote, produced, directed and starred in the documentary. In this day of big budget film and television productions, you can almost count on one hand the number of people who fill all those roles for any one project.
Of course, no one else could have produced My Skin’s On Fire. It’s Fred’s personal story — or, at least, that’s how it starts out. About sixty minutes later, when you get to the end, and you’re wiping your cheeks, laughing a little, applauding, wanting to make an appointment with your dermatologist right now ... by that time it occurs to you that he’s also told your story.
Minutes after I watched My Skin’s On Fire for the first time I knew I wanted to interview Fred, no matter how much “exposure” or “publicity” he’d be getting elsewhere in the psoriasis community. (His road show with the film starts this month. See sidebar.)
I could go on and on for paragraphs. But it’s all very simple and doesn’t really require that many words: If you have psoriasis or psoriatic arthritis, you want to watch My Skin’s On Fire. It will help diminish your feeling of alienation, you will learn something about your disease, and you will take hope and strength away with you.
Rodger Jacobs is an L.A.-based writer. His web site is www.8763wonderland.com. This place cannot be described. You’ve got to visit it. But be forewarned: Don’t come with a prissy demeanor or lots of moral sensitivity — you’re likely to get beat up in the first screen full of information.
Jacobs is also a flaker. He sent me a short story starring a character named Trace, who’s also a flaker. I liked it. I googled “Rodger Jacobs” and learned all kinds of shocking things. I emailed him. He sent me half a dozen more Trace stories. I like them all and Rodger has agreed to let me dish them out to you, here, one at a time. This month we are treated to “Trace at the Tam.”
If my mother read Rodger Jacobs she would screw up her nose and say, “He’s a little on the seamy side. Isn’t he?” Yes, he is. You should know that going in. Trace at the Tam. Or visit the Flaker Creativity page.
Also note that to see a wider array of Sherry’s poems, with paintings by an assortment of artists, visit http://poetrymatters.150m.com/index_files/pages_files/sheehan.html.
We’re running late this month because my father died unexpectedly in February and I spent nearly three weeks with my family “off line.” Mail piled up and many chores associated with updating FlakeHQ were set back during that important time for my mother, my sister, her family, me, and my family.
My father died one day after his 79th birthday from a string of complications that, in summary, suggest he wore out. He had lived the last several years of his life without a right hip, barely mobile, virtually stuck in a recliner. For an active sportsman and career warehouseman, this was a grim way to live.
Late in his life a dermatologist suggested the constant itch and flaking in his ears was psoriasis. When I’d been diagnosed with the disease in the early 1990s, we didn’t think there were any relatives of my Dad’s generation with the disease. I accused my Dad of catching it to usurp the one thing about me that made me special. Dad grimaced, shook his pinky in his ear, and shrugged. “Your being special doesn’t bother me that much,” he said.
While I was coming to terms with a psoriatic life in the early nineties, I would regularly send my folks home movies that showed my ever-changing skin in gruesome close-up. (I moved out of my parents’ house when I was seventeen and have spent most of the intervening decades in different States, hundreds and thousands of miles distant from them.) I remember my first visit to them after they’d seen several movies showing the rapid growth of my P. At the airport, while we were waiting to be rejoined with my luggage, my mother swept flakes off the shoulders of my top coat and said, “And you’ve got this awful dandruff, too.” My father said, “That’s a part of his psoriasis.” He’d been reading up on the disease, even though he wouldn’t be diagnosed himself for another decade.
There’s nothing and everything special about an adult losing an elderly parent. It is one of life’s “leveling experiences” because it is shared in one way or another by us all. Yet it cannot be dismissed, or prepared for, or survived without some associated and very personal effects. We can only hope one of them is being made better by it. -Ed