|Nov-Dec '08 | briefing | mail | interviews | articles | psorchat | don't say this | flaker creativity | flakers' jargon | spouses corner | other places | archives | send mail | ed dewke | search | acknowledgments | legal stuff | Flake: Confessions of a Psoriatic | ©2008 Ed Dewke|
Nov-Dec 2008 Briefing
In This Briefing:
Hi, this is Clara Dewke writing. FlakeHQ just celebrated its 12th anniversary. Ed and I want to take this opportunity to thank each of you for your emails, articles and creative contributions through the years. I’ve watched FlakeHQ grow from a pastime for my husband into a passion.
The other day Ed asked if I would be interested in writing a “Spouses Corner” column for FlakeHQ. He suggested that having lived through all his ups and downs for over twelve years, being in the health care industry myself, and acquiring my own mild case of “sympathetic psoriasis” a few years ago, I could probably lend an ear and sometimes a hand to those who suffer the disease vicariously through a spouse. I said I’d be willing to try.
“You wrote a letter posted at FlakeHQ in 1997,” Ed reminded me. “Why don’t you blow the dust off it and use it to re-introduce yourself to the community?” So, that’s what I’ve done in this first edition of Spouses Corner at FlakeHQ: I’ve reprinted the 1997 letter punctuated by current updates.
If you are a spouse (with or without P yourself) I hope you’ll write to me. I want to collect stories about what it’s like to be attached to someone who flakes. What makes you sad, mad, happy, frustrated, indifferent, helpful and hopeful?
Ed and I wish you all a Great Holiday Season! –Clara D.
Readers who frequent the National Psoriasis Foundation message boards have probably seen posts by P J Leary. She is the founder of NCPEAS, which stands for North Carolina Psoriasis Education, Advocacy & Support. In 2006 she was honored by the Foundation as "Volunteer of the Year." At this year's Annual Meeting of the Foundation, P J provided leadership training and helped plan a new initiative among psoriasis web site proprietors (See "Update on PSites," below). In short, she is a 'mover and shaker' in the grass roots of the psoriasis population. She's worn her veil of leadership and advocacy with quiet certainty for many years and, by her own admission, has always been reluctant to talk publicly about her own travails with our disease. However, in this FlakeHQ interview, P J is unusually candid in talking about her personal history with P and PA, the experiences that motivated her to become a vocal advocate and support group leader, and what is perhaps her most remarkable endeavor. Click here to go to FlakeHQ Interviews home, or here to go direct to the P J Leary Interview.
Once again, the Maryland-based organization Psoriasis Cure Now! is poised to make a significant impact on public awareness with its flock of 2008 winning videos. Some of them are brilliant. There’s tons you can look at, but I recommend you start here. The videos you can watch from this page key on the fact that severe psoriasis can shorten a life by 4 years.
Plans are proceeding to launch a collaboration of web sites devoted to psoriasis. The concept was introduced at the 2008 National Psoriasis Foundation Annual Meeting in Orlando, Florida. Six web-site proprietors constituted a roundtable in a break out session at the meeting; later, three other psoriasis web advocates joined the group. For more about the founders and founding of PSites, click here.
Check back at the end of November and in early December. There will probably be more news about the collaboration. In the meantime, if you operate a web site, blog, wiki or contribute to any of these, please consider adding yourself to our mailing list. Follow the link above and fill out the online form. We'll keep you apprised of what were up to.
Sheehan's latest, "Hills & Skin," is a pithy snapshot of yearning and remembrance. A tight glimpse of how our psoriasis can alter, perhaps intensify, our experience of others. Click here to jump directly to the poem; or start at the Sheehan page.
AMA Speaks Out on Health Care Reform: Check out http://voicefortheuninsured.com. As time passes, it seems the truly effective medications for psoriasis and psoriatic arthritis are the outrageously expensive ones (biologics). The uninsured are hard pressed to manage a prescription for one of these. This should make a lot of folks with psoriasis interested in what's going on to change the inequitable availability of medicines and therapies in this country. You could be sure the pre-eminent association of Doctors in this country — the American Medical Association — would come up with a plan and they have. This web site contains "the plan" in a variety of forms; from a handful of bullet points to a thick white paper. I found it eye opening in all its forms. Haven't yet decided to what degree I agree — but it does appear to be pointing in the right direction. -Ed