[R-G] Our New Discussion Group, the New Lupus Magazine and Related Comment
hunterbadbear at earthlink.net
Tue Feb 3 10:24:13 MST 2004
Note by Hunterbear:
Lupus, a rather rare, murky and mysterious thing -- sometimes lethal --
which wears as many faces as the old time horror film actor, Lon Chaney, is
not something in which most folks have any great interest. That's
understandable. I had never even heard the word before -- but have now been
fighting it since this last  mid-July. Even so, diagnosis with
terminology -- extreme SLE [Systemic Lupus Erythematosus] -- was not
complete until mid October. It can hit anyone -- but is especially hard on
Blacks and American Indians.
The Federal government so far appropriates little money to study and fight
Lupus. This situation is improving slowly -- with pressure. Foot-dragging
by the Feds just might have something to do with Lupus' preference for
racial minorities. On the other hand, it can hit younger women of many
groups very hard.
"Like some other indigenous populations of the world, the incidence of lupus
in Native Americans, though suspected of being high, is not precisely known.
It is, however, thought that in some tribes lupus occurs as much as 10 times
more often than in the European American population. This incidence is more
than twice the incidence of that in the African American population." From
the National Native American Lupus Project: A new Frontier
in the Study of Lupus , based at University of
We now have a Lupus Discussion Group -- open to all interested folks,
closed archives and technically I [routinely] approve new members. [That's
the same arrangement we have on Redbadbear and Marxist.] This is a one-time
notice which I'm placing on a few conventional discussion lists. Please
pass it around, if you conveniently can. Address:
LUPUS NOW, the new magazine put out by the Lupus Foundation of America, may
be the very first of its kind. I subbed earlier this fall when it became
clear that my Lupus [SLE] was a mutually life-time commitment. The premier
issue came -- almost 50 slick and well-written pages replete with photos.
Its basic tone is upbeat. It covers a wide range of topics -- lab research,
pain management, medicines, social/community support, Internet pro and con,
handling doctors/handling patients, books, travel tips, and much more. You
can get three big issues -- Fall, Winter and Spring -- for $25.00.
>From the Lupus Foundation of America site http://www.lupus.org/
You can subscribe to Lupus Now in any of four ways:
Join the LFA by becoming a member of your local Chapter. There's strength in
numbers! See Chapter Locator for contact information.
Subscribe to Lupus Now using the on-line form in the LFA Store.
Mail or fax the Publications Order Form.
Call the LFA National Office at 202-349-1155, M-F, 9 AM - 5 PM ET
[Note by Hunter Bear: the Lupus chapters are relatively few so far and there
is none in Idaho.]
We secured one of its recommended books -- TAKING CHARGE OF LUPUS -- which
has proven quite useful: Maureen Pratt and David Hallegua, M.D. [New York:
Penguin/New American Library paperback, 224 pp., $14.00].
It is always worth remembering that Lupus can be a deadly thing indeed.
Tucked into my copy of LUPUS NOW is a page from my current Arizona State
University College of Arts and Sciences Alumni magazine indicating the
recent death from Lupus of Blake Anderson, an alumnus and a key ASU staffer.
HUNTER GRAY [HUNTER BEAR]
When you cut to the bone and cut away the college degrees, academic and
other titles, published books and articles, ours is essentially a working
class and Indian family. We consistently join unions -- and we always
support them with the greatest vigor.
It's critical to always keep fighting -- and to always remember that, if one
lives with grace, he/she should be prepared to die with grace.
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