Cruetzfeldt-Jakob Disease and CJD Voice

DebbieOney DebbieOney at AOL.COM
Sat Apr 11 14:25:14 EST 1998


Creutzfeldt-Jakob Disease (CJD) is a horrendious fatal brain-deteriorating
disease for which there is no treatment or cure.  It is caused by a prion. One
strain of CJD is linked to Mad Cow Disease in England.  This strain has not
been found in North America.  In the United States people get CJD through 3
means: familial (genetic), spontaneous (don't know how) and iatrogenic
(through a medical procedure).  It can take decades after exposure for the
patient to show symptoms.

CJD victims' first symptoms are often visual, coordination and psychological
problems   Also, some people, such as those who received human pituitary
growth hormone which puts them at higher risk of getting CJD, have to live
with CJD hanging over their heads. People in either of these groups and their
families may find themselves in a mental health professional's office.  CJD
patients often die at home and therefore have home health service and have
family members as caregivers.

CJD is more common than reported.  In one study of Alzheimer patients 13% when
autopsied were found to really have CJD.  

Also, since normal sterilization methods do no kill the CJD infectious agent
and , it can therefore be spread by surgical instruments, it is more of a
danger to public health than mere number of cases would suggest..  And, while
the question of whether iit is spread by blood is controversial, blood
products such as human albumin are used in vaccines such as Measles-Mumps-
Rubella, rabies and allergy shots and it is used in InVitro Fertilization
(IVF) cultures.

CJD Voice is an e-mail discussion group.  Most members have lost a loved one
to CJD or currently have a loved one with CJD.   It provides support to these
people as well tries to increase public awareness of CJD and tries to make CJD
a reportable disease and to increase funding for CJD research so treatments
and
a cure can be found  The CJD webpage has a message board, chat room, links to
other websites with CJD information, a CJD information webring and a list of
CJD researchers accepting financial contributions.

The address for the CJD Voice Webpage is
http://members.aol.com/larmstr853/cjdvoice/cjdvoice.htm  

Please feel free to visit our website and to refer other people to it.
Please have them contact Liz Armstrong at LArmstr853 at aol.com about getting on
the e-mail list.

Thank you.

Deborah Schechter 



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