Speaking for all PA's, I know we take pride in being patient advocates and in taking the time to refer patients to support groups. Below is a list of support groups for patients that dermatology PA's frequently see and refer to.Much of this information was originally furnished by Lynne Lamberg, (email: llamber@nasw.org) who presented "Dermatology & the Information Superhighway" symposium at the American Academy of Dermatology annual meeting on 02/28/98 in Orlando, FL. It is posted with her permission and was lasst updated January, 2001.See instructions below concerning signing onto a support group forum (a "listserv") to send and receive mail to and from the whole group. A WORD of caution about the websites below. Websites with an address of the home page that ends with ".gov" are government offices; those ending with ".edu" are EDUcational institutions; those ending in ".org" are ORGanizations, usually non-profit ones; but those ending in ".com" are COMmercial entities. The same is true for e-mail addresses, although some are private e-mail addresses and will naturally end with ".com" or ".net," such as "aol.com." As with all internet use, the viewer should be aware that medical advice and recommendations given at commercial websites are not endorsed merely because they are listed below, and as stated, if the home page website address ends with ".com," it is likely a commercial, for-profit private enterprise website rather than a non-profit organization and may have a product to sell. Be also aware of people in support groups giving advice and testimonials and consult with your dermatologist if you have questions. When any of these websites or e-mail addresses below become out of date, please let me know. Mary Monroe, Free Derm PA Joblist
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When the forum address given is "listserv@xxx.xxx," that means you can sign up with a support group and send and receive mail to and from the WHOLE group at once. Instructions: To subscribe, send E-mail to the "listserv" address given. In the message area of your e-mail page, the body of the message, type 4 things with one space between each: (1) the word, "subscribe" and (2) the name of the list shown; (3) your first name and (4) your last name. EXAMPLE: If I were subscribing to the group that discusses Alopecia Areata (see below), I would send an E-mail message to the place noted in the list below, listserv@neurpath2.mcg.edu. Then in the text area of my message, I would type 3 things with a space between each: subscribe alopecia mary monroe Do NOT say THANK you, do NOT put a period at the end and do NOT sign your name. Turn off your AUTOMATIC signature block/data if it is ON, or the e-mail msg wil be returned. You may be asked to identify yourself as a physician, patient, family member, etc. Some lists have certain membership criteria, while others are open to anyone. You will then receive instructions including how to unsubscribe and will receive the DIFFERENT e-mail address of the group list. It will NOT be the same e-mail address of the "listserv." You cannot send messages to the listserv e-mail address; you can only subscribe and UNsubscribe to THAT address. Again, you must turn off your signature file, or your mail will be returned. You may be asked to identify yourself as a patient, family member, physician, etc. Some lists have specific membership criteria, while others are open to all. Some groups are moderated, meaning someone views and screens messages that might be obscene, not relevant, or selling something. Others are unmoderated, meaning anything goes. To find newsgroups using your Web Browser such as Netscape or Explorer, try http://www.DejaNews.com ????? or http://www.Reference.com. Search for "skin disorders." You'll see messages from all kinds of groups and instructions on how to read and respond to them. Note: If a list address is no longer working, you can usually find a skin disease simply by typing its name in place of "skindisease" as shown here: http://www.skindisease.org. If the address above is no longer good, search for the skin disease using any search engine such as http://www.altavista.com or http://www.Lycos.com. |
| BOOKS Lynne Lamberg recommends (last updated 1/01)
Davis, James B.
Detwiler, Susan M.; Basch, Reva, and Barrett, Stephen
Rigel, Darrell S., ed.
Schneider, Jay S., PhD, Lidsky, Theodore I., PhD
Wood, M. Sandra (Editor)
White, Barbara, and Madara, Edward, editors
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ALBINISM
ALOPECIA AREATA
ATAXIA
CELIAC DISEASE
CUTANEOUS T-CELL LMPHOMA (CTC)
(see Mycosis Fungoides)
DERMATITIS HERPETIFORMIS DISEASE (See Celiac Disease) DYSTROPHIC EPIDERMOLYSIS BULLOSA
ECTODERMAL DYSPLASIAS
ECZEMA
EHLERS DANLOS
GLUTEN INTOLERANCE GROUP
(see also Celiac Disease)
ICHTHYOSIS
INCONTINENTIA PIGMENTI
LATEX ALLERGY
LUPUS
MARFAN
MASTOCYTOSIS SOCIETY (TMS)
MELANOMAS
ALSO: Online TUTORIAL at UC Davis titled: "You Can Become an Expert at Diagnosing Melanomas": http://matrix.ucdavis.edu/tumors/new/tutorial-intro.html MELSUB@mwt.net (subscribe mel-l) MYCOSIS FUNGOIDES
NEVUS OUTREACH, INC.
PEMPHIGUS VULGARIS: NATIONAL
PEMPHIGUS FOUNDATION (subscribe pvsupport)
PORPHYRIA
PSEUDOXANTHOMA ELASTICUM (PXE)
PSORIASIS
REFLEX SYMPATHETIC DYSTROPHY
ROSACEA
ROSACEA SUPPORT: http://www.rosacea.ii.net SCLERODERMA
SJOGREN'S SYNDROME
STURGE-WEBER SYNDROME
TRICHOTILOMANIA
TUBEROUS SCLEROSIS
VITILIGO
VULVODYNIA
XERODERMA PIGMENTOSUM
Other comprehensive lists of skin disease patient's support help can be found at the web site of: University of Iowa: http://tray.dermatology.uiowa.edu/SuprtGrps.html
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