Cruetzfeldt Jakob Disease

[Guest guest]

Dear Ms. Klinka:

I am writing in response to a recent article published in the Oklahoman

regarding Cruetzfeldt Jakob Disease (CJD). First I want to thank you for

covering this story and increasing public awareness about CJD. More often

than not, reporters are 'scared off' by the fear of political ramifications

or editors quash the story for the same reasons.

I would like the opportunity to share with you some of the issues that

families deal with regarding this disease. These problem issues are the

direct result of medical professionals such as the ones quoted in your

article " Experts Challenge Alarmist Linking of Disease to Cows " .

My father died on May 6, 1996 of CJD. Since that time, I have

researched and read every article published regarding this disease, not only

in humans but animals as well. I'm no expert, I have no medical background,

just the experience of watching my once strong and intelligent father ripped

to shreds before our eyes. No one could tell us how or where he got the

disease, how to comfort him, what would be next, the only thing we were told

is there was no treatment, cure or hope.

In May 1997, two other women and myself started a support group for

families and caregivers of CJD patients. We started with 3 of us and have

since grown into the hundreds. Our group,

http://members.aol.com/larmstr853/cjdvoice/cjdvoice.htm " >CJD Voice

has lobbied congress, supported families, been featured on

Gumble Public Eye, given presentations to public health officials, worked

diligently to educate medical communities, and recently participated in

federal petitions filed against the FDA and CDC.

I have heard horror stories ranging from refusal of basic medical

treatment to refusal of burial services. All of these problems stem from

outdated, misinformed so-called medical professionals that claim to know what

CJD is. The individuals quoted in your article are not researchers and do

not specialize in CJD. These doctors are no more educated than the doctors

that refuse to treat a CJD patient out of fear of contracting the disease,

they are no more educated than the doctor that told a family that their loved

one had (and I quote) " MAD COW " disease and they are certainly no more

educated than the mortician that refuses to allow a family an open casket

because of fear of spreading the disease. If there is nothing to the

claims that these recent cases could be linked to deer meat, why then do you

suppose the CDC has involved themselves and have requested testing of deer

when hunting season begins?

I urge you to continue to research this topic and can guarantee that

you will realize that there is so much more to this story than meets the eye.

We at CJD Voice are not fearmongers nor do we advocate publication of

misinformation or misleading information. However, the next time they tell

you there is no link to eating the deer, ask them if they are testing it and

if so..... how many and how often and at what age. If the deer testing is

anything like the cattle testing has gone, they'll be testing less than 1 in

a million head, and what do you suppose they will find? Nothing, which is

what they want to find, NOTHING. Maybe it is connected, maybe it isn't but

all we want is proof one way or another, that's all we have asked all along.

Please feel free to contact me if you would like to discuss this further.

Thanking you in advance,

Liz Armstrong

http://members.aol.com/larmstr853/cjdvoice/cjdvoice.htm " >CJD Voice