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May-June 2005 Briefing

Psoriasis Advocates Descend on D.C.

 April was the month!  On the 11th, 60+ members and staff of the National Psoriasis Foundation descended upon Congress to lobby for more psoriasis research funding.  You can read the “official” recounting of the day at NPF’s web site.  Now ... do you want a behind-the-scenes retrospective of CHD2005?  You’ve come to the right place, NPF Director of Advocacy Sheila Rittenberg (also a flaker) agreed to share her personal thoughts on the Capitol Hill Day experience.  Read her feature here (also accessed through the “Articles” page in the navigation banner, above).

P-Advocate Michael Paranzino had an opportunity on April 19th to testify before the House Committee on Appropriations, Subcommittee on Labor, Health and Human Services.  His eloquent testimony can be read in its entirety at the Psoriasis Cure Now! website.

And, to top things off, both Psoriasis Cure Now! and the National Psoriasis Foundation announced web-based tools last month for sending support emails to your congressional Representatives and Senators. 

Psoriasis Cure Now! tool: (look for the “Take Action Now” box and enter your zip code to get started).

NPF’s tool: (uhhh ... look for the “Take Action Now” box and enter your zip code to get started.  This is not an echo.)

These web-based tools mean that, if you’re reading this on your computer screen, you’ve just run out of excuses for not getting your 2-cents into Washington.

Adding it all up, I’ve got to believe something wonderful got stirred up in April.  It would be nice to see our disease get the research funding it deserves in the near future, and never has this sentiment been so loudly proclaimed in the corridors of Congress.  We all should be grateful for the efforts a few have expended on our behalf. 


Don’t Look Now — Real Research on a Dietary Approach to P Treatment

Well, I call it real research, though it may not have the kind of “statistical significance” that will put it in text books any time soon. 

It was brought to our attention in PsorChat in March by Laura O.  She pointed us to a September 2004 article in Alternative Medicine Review, titled “Medical nutrition therapy as a potential complementary treatment for psoriasis: five case reports.”  Which dietary approach do you suppose was investigated?

Bingo!  The John O.A. Pagano approach known to many of us through his best-selling book, Healing Psoriasis: The Natural Alternative.  But unless you read the book (like I’m doing right now) you may not know that much of the dietary information originated with Edgar Cayce.  It’s based on a theory about a phenomenon that happens in the intestines, scientifically known as “autointoxication,” and commonly referred to as “leaky gut.”  To risk being criminally simple, let me try to summarize the theory in two sentences:  Because of bad diet and predisposition, the walls of the intestines become permeable (i.e., thin and porous) and allow toxins to get into the blood and lymph systems, from which the body tries to rid them via the skin (in part) and P is one of the consequences.  Correcting the diet is a major (but not only) action that needs to be taken in order to heal the intestinal permeability and eventually cure psoriasis.

Flaker skeptics have long poo-poo’d the Pagano regimen and many derms still say that “no dietary approach has been proven to have a significant effect on psoriasis.”  If this article doesn’t change their minds, I bet it will at least raise their eyebrows.  Catch the article while you can at:


FlakeHQ Interviews:  Dr. Steven Feldman

This update’s interviewee is a dermatologist, a college professor, a web enterprise founder, and a Big Cheese in professional circles at the National Psoriasis Foundation.  He also happens to be a Real Nice Guy with a great smile, winning sense of humor, and a down-home aw-shucks kind of expressiveness that makes you want to go fishing with him.

Among the subjects we discussed in this month’s interview are...

  • What derms do and don’t know about psoriasis
  • How patient non-compliance is probably a rule, not an exception
  • How can provide doctors with some much-needed customer service feedback

... and more.

I hope you enjoy reading the interview as much as I enjoyed participating in it.


Ed’s Raptiva Adventure...

...continues.  I’ve finished four months on this biologic and it’s doing something.  My plaque lesions are flat, hardly red, and flaking a little bit.  I know I promised a glimpse of my Raptiva Diary in this update, but it’s still premature.  I really don’t have any conclusions, yet.  But hey — I tried Enbrel for six months in 2003; I figure I owe Raptiva no less.  (And, between you and me, so far I’m responding a lot better to the Raptiva than I did to the Enbrel.)


New in Flaker Creativity

Some think it’s “a troubling short story” about a male less-than-sympathetic flaker who definitely has problems with women.  See what you think.  “Eagles of Ours” is accessed through the Flaker Creativity page. -Ed