Creutzfeldt-Jakob Disease and CJD Voice, A Support Group
DebbieOney
Creutzfeldt-Jakob Disease has greater public health consequences then the mere
number of reported case might lead one to believe because it is not a
reportable disease in most places, is often misdiagnosed, is infectious and is
not killed by normal sterilizationCreutzfeldt-Jakob Disease (CJD) is a
horrendious infectious 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.
In the United States, Canada and throughout the world people get CJD through 3
means: familial (genetic), spontaneous (don't know how) and iatrogenic (through
a medical procedure such as human pitutitary growth hormones and dura mater and
cornea transplants.) CJD can take decades after exposure for the patient to
show symptoms. However, once a person shows symptoms their decline is rapid
and they die within a year of first showing 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..
Whether CJD is spread by human blood is controversial,. Pooled blood products
are withdrawn as a precaution if it is found after the product has been
released that a person in the donor pool has died of CJD of is at higher risk
of contracting CJD. However, by this point it has often already been used in
humans. While the controversy remains as to whether CJD can be passed through
blood products, blood products continue to be used in vaccines such as rabies
and allergy shots; in InVitro Fertilization (IVF) cultures; and in medical test
fluids.
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. Other members include people
who took human pituitary growth hormones as children and therefore are at
higher risk of getting CJD and people who received notices that the blood
products their children received were from a pool that included a person who
died from CJD. It provides support to these people as well as tries 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 the website and to refer other people to it. Also
feel free to distribute this information to whomever you choose.