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.
NOTES I TOOK: 1 (800) CDC-INFO (232-4636) TTY: 1 (888) 232-6348 prion@cdc.gov 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) 300/year www.cdc.gov/ncidod/dvrd/cjd/ http://www.cdc.gov/ncidod/dvrd/cjd/ http://www.cdc.gov/ncidod/dvrd/bse/ 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)
SUBJECT: New CJD case & stats FROM: RMASHERIN@DHS.STATE.OR.US TO: kevinf@debone.com CC: BPROGULS@DHS.STATE.OR.US , RLEMAN@DHS.STATE.OR.US , SLADD@DHS.STATE.OR.US 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 (http://www.oregon.gov/DHS/ph/acd/diseases/bsecjd/bsecjd.shtml). 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 email: ryan.m.asherin@state.or.us
Do you have a story similar to my aunt's?
Let me know: cjd@debone.com