Creutzfeldt-Jakob Disease (CJD) In Oregon

In the latter part of May, 2009, my aunt started to have difficulty recognizing and remembering things. She saw a doctor in Seaside, Oregon. An MRI was taken, and the first analysis was that nothing was abnormal. On a second check, it was decided something was perhaps abnormal, which warranted a second MRI. The second one showed abnoramality, but resolution was not great so she was sent to OHSU in Portland for a third, better MRI. Her preliminary diagnosis at this point was CJD (Creutzfeldt-Jakob Disease), though it was not clear whether it appeared to be classic ( genetic ) or variant ( mad cow disease). Both appear to be quite rare according to state records and the CDC. But how do we know Oregon State Law requires even suspected cases of CJD (classic, variant and any prion related disease) to be reported within 24 hours of first signs. This apparently has not yet been done in the case of my aunt (~ 1 month from initial prelim. diagnosis). Instead, the Clatsop County Dept. of Health and Human Services called me to ask for information regarding my aunt about a week after I called them asking about CJD in the area. Apparently, after I called them, the state epidemiologist found out and requested that they call me to get more information to identify my aunt so that they could try to track down the case.

One of the reasons I called the health department is that I heard from another relative that 2 other CJD cases have been diagnosed in the relatively small town (~6000) of Seaside, Oregon, since 2003. From the statistics available from the Center for Disease Control and Prevention, 1 death per million per year (when normalized for aging population) is about the normal rate one might expect. Since those diagnosed with CJD don't live very long, the expected diagnosed CJD cases and expected deaths should be about the same: .006*6 = .036 deaths lets say very approximately about 1 every 30 years might be expected for Seaside, Oregon. So, 3 in 6 years sounds like an unusual event, but maybe not eyebrow raising....or is it? I didn't know, but wanted to find out.

When I called the Clatsop Co. Health Dept., I was told that they get about one case every year or so (out of the population of ~35,630 (2000), but there was no report of any CJD in Seaside, OR. When I asked how many were classic vs variant (mad cow), I was told that it was hard to tell because diagnosis is difficult, so that they did not have this information. I asked how they normally find out about cases. I was told that state law requires the doctors to report to the state health officials, and in turn, the state health dept. reports to the counties. However, sometimes reporting was done directly to the county in parallel.

My aunt is in her early 60's and we know of no family history of any disease with these kinds of symptoms. Either way, it's a tragic event. At the same time, I am left wondering if maybe it is more common than the government statistics show.


1 (800) CDC-INFO (232-4636) 
TTY: 1 (888) 232-6348

Confirm 2 cases reported in Seaside, Oregon?

 Local public health department (given on a voluntary basis)
  -  Seaside, Oregon 97138 Clatsop County
   - nearest public health dept: Astoria: 
	503-325-8500 t-fri 8:30-5PM Margo: CJD (classic assumed, doesn't know details) 1 per 2-3yrs
		        m 8-5pm
 Latest confirmed cases in USA?
  3 cases (2 in england, 1 in saudi arabia
		3 months min in england)	

 Must cases be reported?
  - yes, locally to state via city, county or state
  then to fed agency, cdc?
	- not mandatory according to CDC (at least according the person @ CDC who responded to my call)


The bottom of has a link to a .pdf file with Oregon stats:


SUBJECT:   New CJD case & stats  
SENT:  Wed 24 Jun 2009 09:42:51 PDT 
EXPIRES:  Fri 24 Jul 2009 09:42:51 PDT 
Mr. Kevin Ferguson,

Thank you for your email notifying us of your aunt's current health condition. 
We are aware of this case, and have been alerted through our expanded statewide 
surveillance network setup for CJD. 

We have begun an investigation into this case as part of our statewide surveillance 
program. I will keep your contact information in the case file, and follow up with 
any additional questions that I may have regarding this case.

In regards to statewide statistics on CJD cases, all updated statistics will be 
posted to Oregon's Department of Human Services website, under the "Diseases A-Z" 
tab of the Acute and Communicable Disease Prevention section 
( This data is 
aggregated and reported on a state level to protect the confidentiality of the 
cases involved.

Please let me know if you have any further questions at this time,

- Ryan

Ryan M. Asherin
Research Analyst III
Acute & Communicable Disease Prevention
Office of Disease Prevention & Epidemiology
Oregon Department of Human Services

phone: 971-673-1101
fax: 971-673-1100


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Anyone else?

Do you have a story similar to my aunt's?

Let me know: