"CJD and youth"
Deborah Schechter (DebbieOney@AOL.COM)
Mon, 29 Jun 1998 10:07:22 EDT
You obviously have the final say on what you do with my messages but I would
appreciate your reading my response to the e-mail you sent to me before makng
your final decision.
>> I know this lady means well and is very serious, but she has been posting
to the nursing groups for months now and getting little positive response.>>
Actually I have gotten a number of postive e-mail responses from the nursing
listservs including a request to do an online inservice for a group on nurses
on CJD, a request to do an article on CJD for a periodical, and a request to
put my posting in a newsletter. These requests were the result of my posting
on the nursing mailing lists but were made through private e-mail..
>> I see she's extended her reach, probably to every NG and listserv on the
'Net that is remotely youth-oriented. Note the generic "you may have a youth
in your group...">>
I have not extended my reach to every listserv that is remotely youth-
oriented. I have been posting on listservs related to youth simultaneously
with my posts to nurses. I only post on listservs which I feel are relevant.
(I no more want to waste my time than other people's time.) There have been a
number of cases recently involving parents with young children. Just a couple
weeks ago a 34 year old mother died of CJD leaving 3 young children. You can
see the article about her at http://www.livoice.com/feature2.shtml
>>And CJD IS a real disease, albeit a very very rare one in people. It's
bovine equivalent (it's postulated) is bovine spongiform encephalopathy, more
commonly known as "mad cow disease.">>
The CJD we have in the United States is NOT related to bovine spongiform
encephalopathy ("mad cow disease"). It is nvCJD (new variant CJD) which is
related to bovine spongiform encephalopathy and that we have not had a case of
in the United States.
CJD is often misdiagnosed. In one study of Alzheimer patients carried out at
Yale University 13% of patients were found upon autopsy to really have CJD.
>>Fact is, CJD is *not* a sleeping epidemic, it would be **astounding** if you
did have a youth in your group whose parent has died with this, and if vast
numbers of people were showing up with symptoms of dementia (loss of mental
faculties) and myoclonus (seizure-like activity of the muscles) we'd all know
The World Health Organization had the following to say:
"The size of the population exposed and susceptible to the BSE agent in the
United Kingdom is not known, and in addition to uncertainties relating to
the potential length and distribution of the incubation period, prevent an
accurate prediction of the future number of nvCJD cases. Other populations
may also have been exposed to the infective agent as a result of
importation of live cattle and/or cattle products or by products from
BSE affected countries."
"The possibility of a significant epidemic of nvCJD occurring within
the next 10-15 years is not implausible and emphasises the paramount
importance of the early identification of an effective therapy."
We don't have any diagnosed cases of nvCJD (the CJD related to mad cow
disease) in the United States. However, the blood supply presents a strange
situation here. The United Kingdom decided early this year to not use blood
plasma products from its own citizens because of fears of the possibility that
nvCJD may be transmitted through blood products and instead to purchase these
products elsewhere. However, UK citizens are allowed to donate and sell their
blood in the United States. So UK college students who are studying in the
United States can, and do, donate and sell blood in the United States. So are
they potentially contaminating our blood supply? A woman who is a member of
CJD Voice, the e-mail discussion group on CJD to which I belong, just gave a
speech on this very issue at a meeting.attended by FDA and blood bank
representatives earlier this month. And as to classic CJD, as indicated in
the U. S. Congress' Mandate to the Centers for Disease Control (which I
included in my post) the jury is still out as to whether CJD is spread through
blood products. There have been no documented cases of it but the infectious
agent has been found in blood products. And, since the incubation period for
CJD can be decades and most cases are classified as sporadic (cause unknown)
whose to say blood products aren't the cause in some cases. Thus the reason
for the U.S. Congress' Mandate. Hopefully CJD is not transmitted through
blood products since many medical products contain blood products as an
ingredient. These include Measles-Mumps-Rubella, Rabies and Allergy shots,
IVF cultures and medical tests. This is in addition to actual blood products
such as gamma globulin, Rhogram, and blood transfusions. If you'd like to
read the transcripts of the numerous FDA meetings on CJD go to
If you have any further questions or concerns please feel free to contact me.
Debbie Schechter, MSW
Terry Howerton Sakima Group, Inc. SCOUTER Magazine Kansas City