People Affected by Creutzfeldt-Jakob Disease and Adlerians

How would Adlerians help patients affected by Creutzfeldt-Jakob Disease? People affected by Creutzfeldt-Jakob Disease (CJD), the horrendous infectious fatal brain-deteriorating disease may see a therapist. The early sign of CJD are often psychological. so victims will often see a therapist as either an outpatient or an inpatient. In addition, people, including school-age children of Creutzfeldt-Jakob Disease victims who die in their 40s or younger, often require counseling to help them deal with the illness and death. And, then there's the recipients of medical treatments such as cadaver-derived growth hormones (GH) and dura mater transplants (used in brain and other surgeries) and cornea transplants who are at real risk of CJD and the people with a genetic mutation for familial CJD who must live with CJD hangiing over their heads. Another group includes people who receive withdrawal notices that the blood they or, worst yet, their children, received came from a pool which included a donor that died of CJD. While the question of whether CJD is passed through blood products is yet to be resolved, receiving this type of notice causes great anxiety in people. Still another group is athletes or former athletes who have used or may use cadaver-derived growth hormone which puts them at real risk for CJD. Most people in this group probably don't even know they are or would be at risk for CJD and need to be educated. These situations present challenges for therapist. How would an Adlerian help people cope with the uncertainty that they or their family members could develop CJD at any time? There is no preclinical test to see if they have been exposed.

Now for some basic information on CJD.

Creutzfeldt-Jakob Disease is a horrendous rapidly progressive infectious fatal brain-deteriorating disease. One strain of CJD (nvCJD, i.e. new variant CJD) is linked to bovine spongiform encephalopathy (i.e. Mad Cow Disease) in England. CJD is more common than reported. In one study of clinically diagnosed Alzheimer patients 13% when autopsied were found to really have CJD. It is sometimes misdiagnosed as a "fast Alzheimers".

CJD should be considered whenever a patient develops a rapid dementia and myoclonus (involuntary, irregular jerking movements). Initial symptoms are often behavorial/personality changes (a nonviolent person may become violent), visual problems and coordination problems.

In the US and throughout the world people get CJD through 3 means: familial (genetic), sporadic (don't know how) and iatrogenic (through a medical procedure such as cadaver-derived growth hormone (GH) treatments and contaminated surgical equipment) Also, athletes who take or have taken cadaver-derived growth hormones are at risk for CJD. The incubation period can be decades. The person usually dies within a year within a year of showing symtpoms.

Whether CJD is spread by human blood is controversial,. There are precautionary manufacturer withdrawals when a person in the donor pool dies of CJD or is found to be at high risk of the disease. However, by this point it has often already been used in humans.. Blood products are used as an ingredient in vaccines such as the measles-mumps-rubella, rabies and allergy shots; in InVitro Fertilization (IVF) cultures; and in medical test fluids.

People have received precautionary blood withdrawal notices due to CJD risk they can still donate blood. Also, England recently decided to get blood plasma from other countries, rather than from its own people, due to fears of nvCJD (the CJD related to Mad Cow Disease) being transmitted through blood. Yet people from England can donate blood in the US and Canada. The U. S. Congression has mandated the Centers for Disease Control to conduct a study to assess whether the CJD infectious agent is spread through blood products.

For more information on CJD visit the CJD Voice website at http://members.aol.com/larmstr853/cjdvoice/cjdvoice.htm CJD Voice is an e-mail discussion/support group. Most members have lost family members to CJD or currently have family members with the disease. To read personal CJD experiences of CJD Voice members please e-mail me.

• Re: An Adlerian Approach to CJD by Henry Stein, 8/15/98