Psoriasis Newsgroup Resources FAQ v 1.02
kim...@mindspring.com
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. The website itself
is intentionally rather bare bones to make it accessible to the most
people. Sorry, no flashy falling flake effects....
Archive-name: medicine/psoriasis
Posting-Frequency: Semi-monthly
Last modified: 2000/08/20
Version: 1.02
URL: http://pfaq.cjb.net
Copyright: c2000 Kim Malo
Rather than a traditional Q&A FAQ you'll find here an annotated
collection of links to information resources. There are a number of
reasons for setting things up this way. Probably the most important
one to you is that it gives great flexibility in covering the widest
range of questions with the most complete answers possible. Life with
psoriasis and in the psoriasis newsgroup tends to be a matter of
multiple choice questions, with multiple answers.
This resource guide is intended to stay a 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.
They will probably not receive a direct response, but may be
incorporated in future revisions.
**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://home.earthlink.net/~krauster/psoriasis/frust.htm
To go to the active group, if you are reading this from the webpage or
with an HTML enabled newsreader, click on the following:
news:alt.support.skin-diseases.psoriasis
The Psoriasis Newsgroup Posting Guide at
http://www.pinch.com/skin/guide.html offers guidelines to civil
newsgroup life. It's derived from basic netiquette sources, but
specifically oriented towards the needs of a support group. Newsgroup
participants are encouraged to read it and return to it periodically
for refreshers.
DejaNews/Remarq
The Deja website offers searchable archives of newsgroup postings for
all of usenet. Click on the following link:
http://www.deja.com/group/alt.support.skin-diseases.psoriasis
to browse the ASSDP newsgroup using DejaNews instead of through a
direct newsgroup feed. Remarq was another web-based site for free ng
browsing and posting. However, they have been acquired by another
company and no longer offer the same service. They will be removed
from mention in the FAQ after this posting and have already been
removed from the web based version.
However, if you're looking for newsgroup postings on a specific
subject, you'll do better using the pre-set search links on The Skin
Page at http://www.pinch.com/skin/
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, while helping to keep the newsgroup
from getting bogged down in the same answers to the same questions.
**Broad-based psoriasis information and support sources**
The National Psoriasis Foundation (NPF)'s site at
http://www.psoriasis.org/npf.shtml
provides upfront information, along with instructions for further
contact. Available information ranges from answers to basic questions
-e.g. is psoriasis contagious- to reports on cutting edge research.
There's also a place to email for clarification or answers to
questions not covered at the site. While the organization is an
American non-profit, it really is a resource for everyone, not just US
citizens. The NPF accepts non-US memberships with the same benefits as
US members and for the same any amount donation as US members. Anyone
looking for further details can contact me or the NPF directly.
The International Federation of Psoriasis Associations(IFPA, of which
the NPFG is a member, has a website at http://www.ifpa-pso.org/
giving contact information for the member organizations.
DaveW's site
Dave's site at http://members.aol.com/psorsite/
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 alternative
treatments and reviews of other sites.
EdA's Skin Page at http://www.pinch.com/skin/
includes 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. But one of the site's best virtues
is an impressive set of links for psoriasis related searching at
places ranging from US government resources to Merck Medical
Dictionary, all gathered together on one page.
The DMOZ open directory
The psoriasis section of the DMOZ open directory project, at
http://dmoz.org/Health/Conditions_and_Diseases/Skin_Disorders/Psoriasis/
has about 60 psoriasis-related listings, with reviews. It's part of
the popular trend for more effective browsing through web indices
based upon having human experts do the initial filtering for you
instead of just randomly searching. This can be especially helpful for
those relatively inexperienced at finding information for themselves
on the net.
PsoriasisNet
The American Academy of Dermatology finally has its PsoriasisNet site
open at http://www.derm-infonet.com/psoriasisnet/index.htm and at
least partially up and running. It's intended to be a general
forum/meeting place for people with P including general info, message
boards, news releases, etc. At the moment I think there are better
resources at other sites, but it does have a useful Glossary of terms
at http://www.derm-infonet.com/psoriasisnet/glossary.htm that
probably includes some that get thrown around the ng so regularly that
people are embarassed to ask about them.
**Psoriatic Arthritis related links**
DrDoc
DrDoc Online at http://www.arthritis.co.za/psoriasis.html
is the noncommercial informational site of a practicing rheumatologist
in South Africa. The link brings you directly to the PA section of his
site, which includes the basics on how to diagnose PA and the
discussion of the usual methods of treatment
Some other topics of frequent interest covered at the site include:
The first appointment checklist at
http://www.arthritis.co.za/consult.html
is worth reading for anyone facing a new doctor, not just those with
PA.
Methotrexate at http://www.arthritis.co.za/methotrexate.htm
is another section worth reading for those who may be considering it
for psoriasis itself, rather than just PA.
Arthritis NG
The support newsgroup for arthritis in general is
alt.support.arthritis. You can browse it at Dejanews:
http://www.deja.com/group/alt.support.arthritis
Or through your regular newsfeed at News:alt.support.arthritis
Arthritis mailing list
There is also an email list <I> "for those who have Psoriatic
Arthritis, or their family members and loved ones...to share
information, help, hope and feelings" available at
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.
**More specific info sources**
Rxlist at http://www.rxlist.com/
is a searchable database of information about medications.
Current Drug trials
For those interested in new treatment research, the NPF gives a
listing of psoriasis research programs seeking volunteers at
http://www.psoriasis.org/volunteer/index.html
while the US National Institutes of Health (NIH) provides a searchable
database of private and government clinical drug trials at
http://clinicaltrials.gov/ct/gui
Corticosteroid side effects
Corticosteroids are already one of the most commonly prescribed
psoriasis treatments, and are turning up as the hidden ingredient in a
number of OTC preps. They're often misunderstood, with viewpoints
ranging from a belief that their use carries no risk/side effect to
those who consider any use of them as pure evil. An overview of
potential side effects at
http://www.intelihealth.com/IH/ihtIH?d=dmtUSPV2&c=222752&p=~br,IHW|~st,24479|~r,WSIHW000|~b,*|
is worth reviewing by anyone who has used them or intends to use them.
It is important to remember that these are merely possible side
effects, not guaranteed harm. But it's also important to realize that
these drugs are not risk free.
Alternative Treatments
This is another consistantly controversial subject. There's an
amazingly broad range of things with claims made that they'll help
psoriasis. And while some certainly do help some people, many others
range from active scams to honest confusion over cause and effect.
With broader issues of concern around the natural/alternative health
industry in general, as illustrated by a recent article in the San
Francisco Chronicle at
http://www.sfgate.com/cgi-bin/article.cgi?file=/chronicle/archive/2000/06/02/MN75760.DTL
Anyone interested in alternative treatments should search previous
newsgroup discussion on the subject via the links at the Skin Page at
http://www.pinch.com/skin/
Look for other sources without a commercial conflict of interest such
as the treatments part of Dave's site at
http://members.aol.com/psorsite/treatments.html
or an NPF reprint on the subject from their members' Bulletin at
http://www.psoriasis.org/bulletin/30-1/alternative.html
Children with Psoriasis
The NPF's Just4Us page at http://www.psoriasis.org/just4us
was the only really good resource I could find that made much effort
to properly differentiate between concerns about psoriasis in kids vs
psoriasis in adults.
Scalp Psoriasis
The scalp is one of the most common places for psoriasis to appear. Dr
Joe Bark, a dermatologist who participates in the newsgroup, has
posted an essay on some suggested readily available basic approaches.
While this doesn't appear on Dr Bark's website at
http://www.dermconsultants.com/
clicking on this link:
http://www.pinch.com/skinny?deja=Dr+Bark+Scalp+Treatment
will take you to one of the newsgroup repostings of the essay.
Where to find a dermatologist
Word of mouth from a reliable source is always the best. Or look for a
local teaching hospital -they tend to be one of the best sources for
medical specialties. Another US alternative is the NPF's
http://www.psoriasis.org/
Physician Resource Directory 2000, listing more than 1,600 physicians
who treat psoriasis and psoriatic arthritis. It's not intended as an
endorsement of any particular doctor, but does help you locate ones
with an expressed interest in treating psoriasis (dermatologist does
not equal psoriasis expert), which increases your odds of getting the
best help. The American Academy of Dermatologists has a derm locating
source at http://www.aad.org/findaderm_intro.html
but few of the listings give enough information to tell if the doctor
has a psoriasis specialty. It does let you search geographically for a
derm in your area, although this can be frustrating and misleading
because of how some of the names are filed. A derm I saw myself in an
urban hospital clinic did not appear until I happened to look under
the name of a suburb where I did not even know he had an office.
**Life with P and Other P communities**
Flaker HQ
Ed Dewke maintains the Flaker HQ site at http://www.flakehq.com/
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 and
an animated itching logo sure to bring a twisted smile. Always
something to trigger the happier alternative when you're at the laugh
or cry stage.
Aase Marit's Page
Aase Marit Waage is a Norwegian woman with a very personal and
informative page at
http://w1.2380.telia.com/~u238000263/flaker/docs/index.html
Not only is Aase Marit a valuable resource in herself, but her
postings and page provide a useful antidote to the newsgroup's
frequent tendency to seem overly American-centric.
Psorheads
The Psorheads site at http://www.psorheads.com/
is "a collaborative, non-commercial, volunteer-run, interactive
psoriasis-focused community. The site features moderated forums which
are searchable and subscribable, a chat room, and real-time
result-viewable psoriasis surveys that will be created upon *your*
request, (with a forum dedicated to taking survey requests.)"
Yahoo Clubs
Yahoo hosts several psoriasis 'clubs', which include message boards
and chatrooms. The Index of Psoriasis Clubs can be found at
http://dir.clubs.yahoo.com/Health_Wellness/Support/Illnesses/Psoriasis
and has 7 listings, with a short blurb and the number of registered
members for each (which should provide some guage of activity). You
can link to the club of your choice from the index.
Mark Shaw's Page
Mark's Psoriasis page at
http://homepages.tesco.net/~markshaw/psoriasis/home.htm
tells his own story, but also offers psoriasis community options for
penpals, an email list, and a psoriasis singles board.
**Flakes and popular culture**
Among other things covered at Gary Shine's website is a bit about some
famous people with P at http://www.netlink.uk.com/psoriasis/traf.html
from citable sources rather than just gossip.
Even further into the outer limits is a site about skin diseases in
film. However it does have some interesting discussion at
http://itssrv1.ucsf.edu/~vcr/Freeze4.html
about why psoriasis is not seen in movies and a place to bring up new
questions for discussion.
**Miscellaneous**
Psoriasis Books
Looking for books about psoriasis? JerryJ's Pbooks site at
http://www.jhj.com/pbooks/
has links to major online booksellers pre-set to list
psoriasis-related books. Buying books through his links benefits the
NPF at no extra cost to you. That's ANY book, not just the P-related
ones.
Send me an email about this page via the following link
mailto:Kim...@mindspring.com?subject=PFAQ page
Link to the psoriasis newsgroup through your direct newsfeed at
news:alt.support.skin-diseases.psoriasis
The Psoriasis Newsgroup Resource FAQ can be found at
http://pfaq.cjb.net
but will also be coming soon (twice a month) to a
newsgroup near you...