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Path: senator-bedfellow.mit.edu!bloom-beacon.mit.edu!newsfeed.stanford.edu!headwall.stanford.edu!newshub.sdsu.edu!elnk-nf2-pas!newsfeed.earthlink.net!stamper.news.pas.earthlink.net!stamper.news.atl.earthlink.net!newsread1.news.atl.earthlink.net.POSTED!51b964d5!not-for-mail From: pfaq@mindspring.com Newsgroups: alt.support.psoriasis,alt.support.skin-diseases.psoriasis,alt.answers,news.answers Approved: news-answers-request@MIT.EDU 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. Expires: 2/15/2004 Message-ID: <n7dg00df2mt9v9c55mimc33n8b5oaaebvh@4ax.com> X-Newsreader: Forte Free Agent 1.93/32.576 English (American) MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit Lines: 530 Date: Fri, 16 Jan 2004 19:03:24 GMT NNTP-Posting-Host: 67.75.10.13 X-Complaints-To: abuse@earthlink.net X-Trace: newsread1.news.atl.earthlink.net 1074279804 67.75.10.13 (Fri, 16 Jan 2004 11:03:24 PST) NNTP-Posting-Date: Fri, 16 Jan 2004 11:03:24 PST Organization: EarthLink Inc. -- http://www.EarthLink.net 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:PFAQ@mindspring.com?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.