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Newsgroups: alt.support.psoriasis,alt.support.skin-diseases.psoriasis,alt.answers,news.answers
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Subject: Psoriasis Newsgroup FAQ v. 2.2
Followup-To: alt.support.skin-diseases.psoriasis
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.
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Xref: senator-bedfellow.mit.edu alt.support.psoriasis:2329 alt.support.skin-diseases.psoriasis:59118 alt.answers:71164 news.answers:265066
Archive-name: medicine/psoriasis
Disclaimer: Approval for *.answers is based on form, not content.
Posting-Frequency: Semi-monthly
Last-modified: 2002/07/31
Version: 2.2
URL:
http://www.psoriasisfaq.com
Copyright: (c) 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 old 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
Things you should know...
There are some basic facts and ideas about dealing with
psoriasis that it's helpful for everyone to remember when
receiving or offering help and support. They've been posted
over and over to the newsgroup, in various forms and by
different people. This itch list is just an attempt to bring
them all together in a single easy reference.
http://www.mindspring.com/~kimmalo/Itch.html
Broad-based psoriasis information and support sources
The American National Psoriasis Foundation (NPF)
The NPF's site covers a broad range of information and
services. The site operates on multiple levels. The publicly
accessible parts provide a good overview of basic
information about psorisis, its treatment, and the current
state of research. The members only sections include chat
and online versions of NPF publications. 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 worldwide.
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/
The Australian Psoriasis Foundation
The Psoriasis Assn, Inc. is not a member of the IFPA, but
their 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/gooddoctor.htm
o Why Support Groups
http://www.psoriasis.org.au/whygroups.htm
http://www.psoriasis.org.au/articles.htm
NIH
The United States' National Institutes of Health (NIH)
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
Dermatlas Online Digital Dermatology Image Library
Dermatlas has some handy navigational tools to go with its
picture library. You can look for illustrations in several
different ways, from a guided text search to an illustration
that lets you click on the relevant body part to a
'differential diagnosis' tool still under development that
lets you search by certain description characteristics. It's
intended as a resource for everyone from patients to
professionals, so while some of terminology is pretty easy
to understand, some may be a bit too technical for the
average layman. The diagnosis link next to each illustration
will bring you directly to a Medline search under that
diagnosis. As the site disclaimer notes, this sort of tool
set really should not be used as a do-it-yourself substitute
for proper medical diagnosis and advice, but it's still a
very useful source.
http://www.dermatlas.org
Psorsite
The Psorsite 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 gives lists and
reviews of other sites.
http://www.psorsite.com
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 and wide
ranging set of links for searching out information about
psoriasis or other medical concerns. These include US
government resources, dictionaries, newsgroups, and even a
link to search Psorsite (see above). One nifty feature of
searching from this site is that it generates a short new
URL you can easily copy into email or a newsgroup post to
let someone else see the same search results.
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 the usual psoriasis basics plus some useful
features, 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. Plus a related discussion on
the Human Genome Project and psoriasis.
http://www.derm-infonet.com/psoriasisnet/index.htm
http://www.derm-infonet.com/psoriasisnet/BasicFactsAbouttheGenetics.htm#Basic.
http://www.skincarephysicians.com/psoriasisnet/feb.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
Topical Therapies
Topical creams and ointments are among the most commonly
prescribed treatments for psoriasis. There's a good overview
of them on the American Academy of Family Physicians site.
Unfortunately it's a couple of years old and so doesn't
include some of the newer options. But for the topicals that
are covered, you get a good thumbnail review of the
treatment's history, what's known about how it works, how
it's generally used (including information about available
strengths, such as a corticosteroid potency chart), and some
of the common causes for concern with use.
http://www.aafp.org/afp/990215ap/957.html
New Treatments - Current Drug Trials and the Research Pipeline
There isn't yet a cure for psoriasis, but there is an
ongoing search for safer and more effective treatments.
To see what's in the pipeline:
o The NPF periodically publishes an updated overview of
psoriasis drugs in the research pipeline. More
extensive and more current information is available
through the search option at the NPF's site.
http://www.psoriasis.org
http://www.psoriasis.org/pipeline.htm
o The Pharmaceutical Research and Manufacturers of
America (PhRMA) has it's own searchable database of new
medicines in development for a number of diseases,
including psoriasis
http://newmedicines.org/meds/development/
http://newmedicines.org/meds/development/drugs_printer.phtml?indication=242
To find information about actual clinical trials:
o The NPF site includes a listing of clinical trials
looking for volunteers.
http://www.psoriasis.org/volunteer/index.html
o NIH also provides a searchable database of private and
government clinical
trials.
http://clinicaltrials.gov/ct/gui
o 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://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
Fortunately it's relatively rare for psoriasis to appear in
children. Unfortunately, while many websites discuss
juvenile onset psoriasis, very few of them outside the
technical medical journals significantly differentiate it
from adult onset. And there are some key differences to
consider, from risk potential associated with the same
treatments on developing bodies to coping with very
different social factors. The NPF still does the best job of
addressing these differences with their Kids, Youth and
Teens resources.
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
A given derm may be a very good doctor, but with primary
expertise and interest in something other than psoriasis.
Therefore word of mouth recommendation from a reliable
source is almost always the best. If that is not an option,
try looking to local teaching hospitals, which tend to be
among the best sources for medical specialties -particularly
when you need a specialist among specialists, such as a
pediatric derm with psoriasis expertise. In the United
States, the NPF offers a Physician Resource Directory
listing physicians who have stated that they treat psoriasis
and psoriatic arthritis. Inclusion in the directory is not
intended by the NPF as endoresement of any given doctor. The
American Academy of Dermatologists also has a derm-locating
source, but few listings make it clear if the derm has a
psoriasis specialty.
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
Psorsite, 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 Psorsite, a
multiple vitamin overdose review available on several sites,
the vitamin toxicity section at emedicine.
http://www.pinch.com/skin/
http://www.psorsite.com/treatments.html
http://www.psoriasis.org/c300.htm http://www.rxlist.com/
http://www.psorsite.com/docs/herb_warnings.html
http://health.yahoo.com/health/dc/002596/0.html
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. Psorsite 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://www.psorsite.com/terry.html
http://www.psorsite.com/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 things such as 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. Psorsite 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://www.psorsite.com/herbals.html
http://www.psorsite.com/vitamins.html
http://www.psorsite.com/oils.html
http://www.psorsite.com/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 also worth reading for those
considering the treatment for psoriasis itself. PA:
http://www.arthritis.co.za/psoriasis.html Appt:
http://www.arthritis.co.za/consult.html mtx:
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
There has been an explosion of psoriasis community
alternatives to the newsgroup. Options now available range
from email lists and chats housed in Yahoo Groups and MSN
Communitites to the addition of online chat at the NPF site
to sites established by fellow sufferers to other sites
sponsored by members of the alternative and conventional
medicine communities. Too many really to try for a
comprehensive list here. While some have specific agendas
beyond just helping people with psoriasis, that it would
conflict with the more general purpose of this FAQ to
promote them by listing.
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/
For those interested in seeking out other communities on
their own, here are a few pointers:
o Yahoo hosts several psoriasis 'clubs', which include
message boards and chatrooms. Their 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 gauge of activity).
http://dir.clubs.yahoo.com/Health___Wellness/Support/Illnesses/Psoriasis/
o MSN psoriasis communities can be located using their
search tool. One of the MSN communities is run by a
newsgroup participant at PsoriasisSupport
http://communities.msn.com/search
http://communities.msn.com/PsoriasisSupport
o Other communities can be found via searching the web
and newsgroup posts, or through links from other
psoriasis pages.
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 Jerry Mathers, who starred in the old American TV
sitcom "Leave it to Beaver", has psoriasis and has gone
public about it as the spokesperson for a campaign
sponsored by a partnership between the NPF and Biogen.
http://www.stepintomyskin.org/
o An article from the British Medical Journal offers a
few more famous names.
http://www.bmj.com/cgi/content/full/315/7123/1709
Flake Flicks
A trip into the outer limits leads to 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/
Something to Sing about
And even further into the limits is the Root Boy Slim song
Heartbreak of Psoriasis, with lyrics that may strike a flaky
chord.
http://members.aol.com/geekox3/heartbre.htm
Miscellaneous
Psoriasis Books
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://www.psoriasisfaq.com
To reply, take less from the email addy
The psoriasis newsgroup FAQ can be found
at
http://www.psoriasisfaq.com
and posted twice monthly to a ng near you.
