New Creutzfeldt-Jakob Disease Websites

DebbieOney at AOL.COM DebbieOney at AOL.COM
Thu Sep 16 00:00:33 EST 1999


Since I posted last year about Creutzfeldt-Jakob Disease (CJD) three new 
CJD-related websites have been started which you would probably find valuable.

CJD is an infectious rapidly progressive fatal brain-deteriorating disease 
for which there is no treatment or cure.  People throughout the world get 
CJD.  One strain nvCJD is thought to be related to bovine spongiform 
encephalopathy (i.e. Mad Cow Disease) in the United Kingdom.  Traditional 
sterilization procedures do not inactivate the CJD infectious agent.  The 
incubation period varies greatly with symptoms emerging in known cases in 15 
months to 30 years after exposure. There is no preclincal test to determine 
if infection took place after a possible exposure.

CJD most frequently appears in people ages 50-75.  However, there are victims 
in their 40s, 30s and even 20s.  The officially stated mortality rate of 
about one person per million per year appears to be an understatement since 
CJD often escapes detection.  In a Yale University study 13% of 
clinically-diagnosed Alzheimer patients were found on autopsy to have CJD.  
Classical CJD symptoms are a rapidly progressive presenile dementia; 
involuntary, irregular jerking movements; and progressive motor dysfunction.  
Early symptoms can include failing memory, behavior changes, visual 
disturbances, and lack of coordination. 

The following are the websites:

The Blood-Recall Withdrawal - CJD website is the website of the Blood-CJD 
e-mail support/discussion group.  The website has information on CJD.  
Blood-CJD was formed to meet the support needs of people who had received 
notices that the blood products that they, or their children, received were 
withdrawn from the market because a member of the donor pool died of CJD or 
was at risk for the disease.  Studies are currently being conducted to 
determine if CJD is transmitted to humans through blood. The infectious agent 
has been found in blood but there have been no documented cases of blood 
transmission of CJD in humans.  The <A 
HREF="http://members.aol.com/debbieoney/blood.htm">Blood Recall/Withdrawal - 
CJD</A> website is at http://members.aol.com/debbieoney/blood.htm   If 
interested people have e-mail but not internet access they can register for 
the group by contacting me by e-mail.

The Many Faces of Creutzfeldt-Jakob Disease website is a collection of 
personal stories that put a face on CJD.  There are currently 33 stories on 
the website. Most of the stories are about people who died of CJD. In these 
stories people describe early symptoms and progression of the disease. There 
are also stories by blood withdrawal notification recipients.. The website is 
continously updated as new stories are submitted.  The <A 
HREF="http://members.aol.com/stacy91434/cjd/cjd.htm">Many Faces of 
Creutzfeldt-Jakob Disease</A> website is at 
http://members.aol.com/stacy91434/cjd/cjd.htm  

The CJD Watch website is an attempt to track CJD cases throughout the world 
by geographical area.  The website also  has a CJD Victims' Profiles Database 
which lists such items, when available, as sex, age at death,  length of 
illness, occupation, geographical location and method of CJD diagnosis for 
CJD victims.  This website is continuously updated as new cases are 
submitted.   The <A 
HREF="http://members.aol.com/stacy91434/watch/watch.htm">CJD Watch</A> 
website is at http://members.aol.com/stacy91434/watch/watch.htm   

I'd be happy to provide CJD fact sheets to anyone who would like them.

Deborah Oney
DebbieOney at aol.com




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