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From:
[email protected] (Kim Malo)
Newsgroups: alt.support.skin-diseases.psoriasis,alt.support.psoriasis
Subject: Psoriasis Newsgroup FAQ v. 2.1
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Summary: This is a collection of links to information sources
about psoriasis and the alt.support.skin-diseases.psoriasis
(ASSDP) newsgroup (NG). It is posted to the newsgroup on a
semi-monthly basis and is available on the web at the URL given
below.
Archive-name: medicine/psoriasis
Posting-Frequency: Semi-monthly
Last modified: 2002/02/12
Version: 2.1
URL:
http://pfaq.cjb.net
Copyright: � 2000-2002 Kim Malo
There are a number of reasons for creating an annotated
collection of links rather than a traditional Q&A FAQ, but
primarily it's because so much of the available information about
psoriasis involves multiple choice questions with multiple choice
answers. This method gives the flexibility to cover a wider range
of questions with more comprehensive answers. It also means that
the resource guide is itself a continual work in progress. Listed
links will change to reflect available resources or apparent
issues of concern. Suggestions for changes should be posted to
the newsgroup. Even if there is no direct or on-group response,
they will be reviewed for inclusion in future revisions.
------------------------------------------------------------------------
CONTENTS
1. Basic newsgroup/net tools, rules, and info
2. Broad-based psoriasis information and support sources
3. More specific info sources
4. Alternative Treatments
5. Psoriatic Arthritis related links
6. Life with P and other P communities
7. Miscellaneous
Basic newsgroup/net tools, rules, and info:
Newsgroups
Although two different psoriasis newsgroups appear on some
newsfeeds, alt.support.skin-diseases.psoriasis was long ago
established as the sole active group. Users are encouraged
to only post to ASSDP. Since this FAQ appears in both
groups, you should take a moment now to verify that you are
in the active group. For the story behind why two groups
exist, see Krauster's story at
http://www.mindspring.com/~kimmalo/KraustersStory.htm
To go to the active group, click on ASSDP at
news:alt.support.skin-diseases.psoriasis
Posting Guide
The Psoriasis Newsgroup Posting Guide offers guidelines to
civil newsgroup life by combining basic netiquette with the
special needs of a support group. Newsgroup participants are
encouraged to read it before they start posting and
periodically check in for refreshers. Or even to offer
suggestions for improvement. There's a link to the ng
charter that includes a recent update by the original author
to clarify the role of promotion on the newsgroup.
http://www.pinch.com/skin/guide.html
Google
Since acquiring DejaNews, Google has become the standard
place to access newsgroups via a website. You can browse,
search (including prior years' archives), and post from
their site. If you'd like to search for postings on any
subject of interest, go to: Searching Usenet at Google at
http://groups.google.com
Anyone with specific questions is strongly encouraged to
begin by searching previous discussion before posting to the
newsgroup. You'll broaden your pool of responses, and
minimize bogging the newsgroup down in the same answers to
the same questions. You can go straight to the Psoriasis
newsgroup on Google at Google Psoriasis NG.
http://groups.google.com/groups?hl=en&group=alt.support.skin-diseases.psoriasis
Broad-based psoriasis information and support sources
The American National Psoriasis Foundation (NPF)
The NPF's site provides services and information ranging
from answers to basic questions to reports on current
research to a place for emailing questions relating to
psoriasis. The site operates on multiple levels, with
sizable publicly available resources extended by
members-only services, such as online chat. Even though it
is a charitable organization based in the United States, it
is intended to be a resource for everyone, with membership
open to anyone in the world.
http://psoriasis.org/npf.shtml
The International Federation of Psoriasis Associations (IFPA)
The website for the IFPA, of which the NPF is a member,
gives contact information for worldwide psoriasis
organizations.
http://www.ifpa-pso.org/
NIH
The United States' National Institutes of Health maintains a
MEDLINE PLUS page devoted to psoriasis, providing quick
links to a variety of NIH and outside information sources. A
nice feature is the ability to do MEDLINE searches pre-set
to recent psoriasis research with a single click.
http://www.nlm.nih.gov/medlineplus/psoriasis.html
The Australian Psoriasis Foundation
The Psoriasis Assn, Inc. site has some articles of general
interest to go with the usual psoriasis facts. Examples from
their Index include:
o What is a Good Doctor
http://www.psoriasis.org.au/good-doc.htm
o Why Support Groups
http://www.psoriasis.org.au/sup-grup.htm
http://www.psoriasis.org.au/circmain.htm
Psorsite
DaveW's Psoriasis Information Site is probably the most
comprehensive resource out there. Subjects range from a
short list of important misconceptions (that still pop up
regularly on the newsgroup) to information about
conventional and alternative treatments that lists and
reviews other sites.
http://members.aol.com/psorsite/
EdA's Skin Page
The Skin Page has links to a variety of psoriasis-related
subjects at Ed's own site, including the often controversial
Hall of Pshame page dedicated to scam/misinformation
de-bunking. Regardless of your thoughts on any of the
specific subjects targeted, the site provides some valuable
lessons on the need to be careful about accepting product
claims at face value.
http://www.pinch.com/skin/
http://www.pinch.com/skin/pshame.html
The Skin Page also includes an enormously useful set of
links for searching places ranging from United States
government resources to the Merck Medical Dictionary to
newsgroups via Google.
DMOZ
The Psoriasis section of the DMOZ Open Directory project
follows the trend for more effective browsing based upon
having human experts do the initial filtering rather than
just randomly searching yourself. This can be especially
helpful for those with less time or expertise for finding
information on the net themselves.
http://dmoz.org/Health/Conditions_and_Diseases/Skin_Disorders/Psoriasis/
PsoriasisNet
The American Academy of Dermatology PsoriasisNet site
includes some useful features with the usual psoriasis
basics, notably:
o A Glossary of terms, including many that appear on
the newsgroup but may be unfamiliar.
http://www.derm-infonet.com/psoriasisnet/glossary.htm
o An overview on the role of genetics in psoriasis,
targeted to the layman.
http://www.derm-infonet.com/psoriasisnet/BasicFactsAbouttheGenetics.htm#Basic.
o A related topic from one of their PsoriasisNet
this month updates talks about the Human Genome Project
and psoriasis -including the significance of psoriasis
being a multi-factorial (there are multiple genes
involved) disease when looking for easy answers.
http://www.skincarephysicians.com/psoriasisnet/feb.htm
http://www.derm-infonet.com/psoriasisnet/index.htm
More specific info sources
Rxlist
Rxlist is a searchable database of basic information about
both conventional and alternative medications, such as how
to use the medicine, likely side effects and common
interactions. For example, cortico-steroids such as temovate
are among the most common but misunderstood psoriasis
treatments. Responses to inquiries on the newsgroup have
ranged from labeling any talk of risk as scaremongering to
those who consider any use of steroids as pure evil. Cross
checking with the rxlist results shows reality lies in
between.
http://www.rxlist.com/
http://www.rxlist.com/frame/display.cgi?drug=TEMOVATE
New Treatments - Current Drug Trials and the Research Pipeline
The NPF site carries a number of resources covering new
treatments in development. Their search tools can be used to
look up specific drugs, and they periodically publish a more
general overview of the current drugs in the research
pipeline. They also provide a listing of Psoriasis research
programs seeking volunteers. The United States National
Institutes of Health (NIH) provides a searchable database of
private and government clinical drug trials. The Research
Section of the DMOZ site provides links to a variety of
sources for trials and other research information, ranging
from the UMich Psoriasis Genetics Lab to an article that
looks at the psoriasis drug development process from the
unique perspective of a relative insider who has the disease
himself.
http://www.psoriasis.org
http://www.psoriasis.org/pipeline.htm
http://www.psoriasis.org/volunteer/index.html
http://clinicaltrials.gov/ct/gui
http://dmoz.org/Health/Conditions_and_Diseases/Skin_Disorders/Psoriasis/Research/
http://www.psoriasis.umich.edu/index.html
http://www.signalsmag.com/signalsmag.nsf/0/59D864E70A7D28DB88256B020013FA6B
Children with Psoriasis
Any web search on the subject will turn up a large number of
hits, but the NPF's Kids, Youth and Teens page made the
strongest efforts to differentiate between psoriasis in kids
and in adults. And they are very different, from the risks
involved with the same treatment options on developing
bodies to the associated psychological and social factors.
http://www.psoriasis.org/f000.htm
Scalp Psoriasis
The scalp is one of the most common and frustrating places
for psoriasis to appear. Dr Joe Bark, a dermatologist who
occasionally participates in the newsgroup, has posted an
essay suggesting some readily available basic approaches. at
http://www.mindspring.com/~kimmalo/Scalp.htm
Where To Find a Dermatologist
Dermatologist does not equal psoriasis expert. A given derm
may be a very good doctor, but with primary expertise and
interest that lie in a different dermatological specialty.
Therefore word of mouth recommendation from a reliable
source is almost always the best. A useful alternative is to
try a local teaching hospital. These tend to be one of the
best sources for medical specialties, and a particularly
good option when you need a specialist among specialists
such as a pediatric derm. In the United States, the NPF
offers a Physician Resource Directory listing physicians who
have stated that they treat psoriasis and psoriatic
arthritis. The NPF issues it with the disclaimer that
listings are not intended as an endorsement of the doctor by
the NPF. The American Academy of Dermatologists has a
derm-locating source, but few listings make it clear if the
derm has a psoriasis specialty. It does let you search
geographically, but experience has shown that a given derm
may only appear under one of their several possible clinic
locations.
http://www.psoriasis.org
http://www.aad.org/findaderm_intro.html
Alternative Treatments
Overview
Alternative medicine's increasing general popularity, paired
with psoriasis' profile as a chronic disease for which
conventional medicine offers only treatments of varying
success that cannot yet cure, make this a popular, if
controversial topic.
There's an amazingly broad range of things claimed to help
psoriasis. Many clearly do help some people, but many others
range from active scams to honest, well meant confusion over
cause and effect or the nature of psoriasis. With broader
issues of concern around the natural or alternative health
industry in general, as illustrated by an article from the
San Francisco Chronicle. This means that a certain amount of
caution is advised for some of the very reasons people find
such treatments so appealing -they are not usually well
regulated for quality control or safety and tend to involve
strictly anecdotal evidence backing recommended approaches
rather than the sort of analysis underlying scientifically
proven therapies. Which makes the reliability of the source
an essential consideration.
http://www.sfgate.com/cgi-bin/article.cgi?file=/chronicle/archive/2000/06/02/MN75760.DTL
The fact that psoriasis is as much a matter of widely
varying triggers as the genetic fault creating something to
trigger makes credible alternative approaches that are not
inherently harmful in any way (harm including things such as
excessive cost) worth considering. Especially since stress
linked cases may also be susceptible to a placebo effect,
where the mere fact of doing something for your psoriasis
that you are comfortable with helps alleviate it more than
the actual treatment.
However, because credibility and commercial conflicts of
interest should be an ongoing concern with alternative
recommendations, anyone interested in alternative treatments
should begin with Searching previous newsgroup discussion.
Then cross reference through other sources clearly without a
commercial interest, such as the treatments section of
DaveW's site, or the NPF's alternative treatment page.
Separate from whether a given treatment will help your
psoriasis, it's important to realize that alternative or
natural does not equal safe, with no side effects. These
treatments can have risks, including interactions with other
meds. Places to find out about some of these include: the
alternative section at Rxlist, the herbal warnings page at
DaveW's site, a multiple vitamin overdose review available
on several sites, the vitamin toxicity section at emedicine.
http://www.pinch.com/skin/
http://members.aol.com/psorsite/treatments.html
http://www.psoriasis.org/c300.htm http://www.rxlist.com/
http://members.aol.com/psorsite/docs/herb_warnings.html
http://webmd.lycos.com/content/asset/adam_poison_multiple_vitamin_overdose
http://www.emedicine.com/emerg/topic638.htm
Diet and Lifestyle
Conventional wisdom says there is no dietary link to
psoriasis. However, there is enough anecdotal evidence to
indicate that most people with psoriasis will benefit from a
healthier diet and lifestyle, while some psoriatics are
subject to specific dietary triggers. That's not the same as
saying there is a single specific diet psoriatics should
follow, although several are promoted. Not everyone is
subject to dietary triggers, and those that do affect people
vary by individual.
If you want to explore this approach, a Search of the
newsgroup is the best place to start. It will not only show
how variable these triggers can be, but also helps identify
which ones seem most common as a likely starting point for
experimenting. DaveW's site includes a page for Terry's
story, detailing the experiences and theories of one of the
newsgroup regulars, and also has a section giving links to
some other dietary approaches.
http://www.pinch.com/skin/
http://members.aol.com/psorsite/terry.html
http://members.aol.com/psorsite/diet.html
Herbal Medicine and Supplements
While there are a variety of herbal medicines and
supplements that may help through the inclusion of
ingredients beneficial to the skin or in dealing with other
triggering issues, as with diet there is no single herbal or
supplement solution to psoriasis. Special caution is urged
about making the effort to identify the ingredients in
anything you take. Some 'herbals' have been found to contain
steroids among their active ingredients and there have been
toxicity issues with some Chinese herbal medicines.
As usual, a Search of the newsgroup archives is highly
recommended. There tend to be cycles of popularity with
these sorts of treatments, so that what is dominating the
newsgroup today may differ radically from what was being
said a couple of months ago or may have been looked at
differently then. DaveW's site is very useful in identifying
some of what's offered and where to find out more about it.
He has separate sections for herbals, supplements, oils and
Chinese Traditional Medicine (including acupuncture).
http://www.pinch.com/skin/
http://members.aol.com/psorsite/herbals.html
http://members.aol.com/psorsite/vitamins.html
http://members.aol.com/psorsite/oils.html
http://members.aol.com/psorsite/tcm.html
Psoriatic Arthritis Related Links
DrDoc
DrDoc Online is the noncommercial informational site of a
practicing rheumatologist in South Africa. The PA section of
his site covers the basics on how to diagnose PA and
discusses the usual methods of treatment. Some other topics
of frequent interest covered at the site include:
o The first appointment checklist is worth reading
for anyone facing a new doctor, not just those with PA.
o Methotrexate is another section worth reading for
those who may be considering it for psoriasis itself,
rather than just PA
http://www.arthritis.co.za/psoriasis.html
http://www.arthritis.co.za/consult.html
http://www.arthritis.co.za/methotrexate.htm
Arthritis NG
The support newsgroup for arthritis in general is
alt.support.arthritis. You can search at Google: Google
Usenet Search
Or browse through your regular newsfeed Google:
http://groups.google.com/groups?hl=en&group=alt.support.arthritis
Newsfeed: News:alt.support.arthritis
Arthritis Mailing List
There is also an email list "for those who have Psoriatic
Arthritis, or their family members and loved ones...to share
information, help, hope and feelings" available from this
Link
http://www.egroups.com/group/PsoriaticArthritis
AOL
AOL has a number of member-only resources available.
LadyAndy, one of the P newsgroup regulars, hosts several
live online chats and has kindly posted to the newsgroup
that people could email her for info on AOL specific
resources. You can contact her through the newsgroup, or use
the link to my email below to submit a message for
forwarding to her.
Life with P and other P communities
Flaker HQ
Ed Dewke maintains one of the best and longest running P
communities at his Flaker HQ site. It's funny and
informative. Sure, the usual stuff, but also things like a
painfully funny list of what NOT to say to someone with P.
Always something to trigger the happier alternative when
you're at the laugh or cry stage.
http://www.flakehq.com/
Yahoo Clubs
Yahoo hosts several psoriasis 'clubs', which include message
boards and chatrooms. The Index of Psoriasis Clubs provides
links to what's currently available, with a short blurb and
the number of registered members for each (which should
provide some guage of activity).
http://dir.clubs.yahoo.com/Health___Wellness/Support/Illnesses/Psoriasis/
Sharee's Psoriasis Support Community
Sharee posts periodically to the ng and maintains a support
site at Sharee's Site that has a regularly scheduled chat
every Friday night. You can sample the chat through easy
links on the home page to the last few weeks' discussions.
http://communities.msn.com/PsoriasisSupport
Mark Shaw's Page
Mark's Psoriasis Page tells his own story, but also offers a
variety of psoriasis community options.
http://homepages.tesco.net/~markshaw/psoriasis/home.htm
Michael's Psoriasis Help Page
Michael has drawn on his own frustrations with the medical
community and others to set up a United Kingdom based site
for sharing among psoriatics at Michael's Psoriasis Help
Forum.
http://www.psoriasis-help.org.uk/
Michelle Horisco's columns
Michelle Horisco has created a Site that includes a series
of weekly articles on a variety of subjects related to P.
http://www.suite101.com/welcome.cfm/12798
Flakes and Popular Culture
Famous People with P
o Among other things covered at Gary Shine's site is a
bit about some famous people with P
http://www.netlink.uk.com/psoriasis/traf.html
o Art Garfunkle mentions having P in an online interview
http://www.artgarfunkel.com/articles/cjn.htm
o While an article from the British Medical Journal
offers a few more famous names.
http://www.bmj.com/cgi/content/full/315/7123/1709
Flakes and Flicks
A bit further into the outer limits is the Skinema site on
dermatology in the cinema. The only known film about
psoriasis -Dennis Potter's "Singing Detective"- gets cited,
but psoriasis also turns up in some of the onsite
discussions.
http://www.skinema.com/
Miscellaneous
Psoriasis Books
Looking for books about psoriasis? JerryJ's Pbooks site has
links to major online booksellers pre-set to list
psoriasis-related books. Buying books or anything else
available at these sites through his links benefits the NPF
at no extra cost to you. That's ANYTHING, not just books,
not just the P-related stuff. Go crazy in a good cause.
http://www.jhj.com/pbooks/
Send me E-mail about this page
mailto:
[email protected]?subject=PFAQ page
Link to the psoriasis newsgroup through your direct newsfeed
news:alt.support.skin-diseases.psoriasis
Cross posted to alt.support.skin-disease.psoriasis and
alt.support.psoriasis
The Psoriasis Newsgroup Resource FAQ can be found at
http://pfaq.cjb.net
