Received: from imo15.mx.aol.com (imo15.mx.aol.com [198.81.17.37]) by csf.Colorado.EDU (8.8.4/8.8.4/CNS-4.1p-nh) with ESMTP id RAA13002 for ; Thu, 9 Apr 1998 17:16:53 -0600 (MDT) Received: from DebbieOney@aol.com by imo15.mx.aol.com (IMOv13.ems) id GTRZa02806 for ; Thu, 9 Apr 1998 19:16:45 -0500 (EDT) From: DebbieOney Message-ID: <45d2f55c.352d56df@aol.com> Date: Thu, 9 Apr 1998 19:16:45 EDT To: MedSoc@csf.colorado.edu Mime-Version: 1.0 Subject: Creutzfeldt-Jakob Disease and CJD Voice Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit 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. 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 services and 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@aol.com about getting on the e-mail list. Thank you. Deborah Schechter