Letter to the Editor RE:AHEC News - October Issue

[Guest guest]

Dear Ms. Failing:

Recently, I had the pleasure of reading the article entitled " CJD: The

Unknown Killer " submitted by Dorothy Kramer, RN. I would first like to

express my personal gratitude to you and your publication for encouraging

public awareness by publishing Mrs. Kramer's article. Her story is both

compelling and factual. However, I was most upset after reading the

Physicians' Comments on CJD submitted by Matt Ivory, MD, and , DO.

Their comments, while they began in a sympathetic tone, were not only

condescending, they were misinformed and represent the ignorance of some

physicians that many families have endured over the years because of a lack of

knowledge. I would appreciate you forwarding this email to both of them so

that they might be able to educate themselves on this topic before making

misinformed comments in the future.

First, the reference to this disease originally only seen in tribes who ate

brains as part of their culture: Kuru, is another transmissible spongiform

encephalopathy [TSE] as is scrapie in sheep, chronic wasting disease in deer,

bovine spongiform encephalopathy [bSE] in cows and transmissible mink

encephalopathy [TME] in mink. To insinuate CJD was originally caused by

cannibalism is insulting not to mention incorrect.

" There have been a few reported clusters in families, which suggest that there

may be a genetic component. " MAY? Your physicians obviously have not been

reading their medical journals. Many studies have been conducted. There is

definitely a genetic mutation present, albeit a lower percentage than sporadic

CJD, to minimize it's existence only serves as yet another insult to the

families that are facing the horror of this disease generation after

generation.

" However to simply suggest that this is a normal part of the brain which turns

to a not normal part of the brain, is a far too simple explanation. " Perhaps

your physicians should read Dr. Stanley Prusiner's (nobel prize winner for his

work with prions) papers.

" CJD and Alzheimer's can only be definitively diagnosed on autopsy. " There is

a diagnostic test available called the 14-3-3 spinal fluid test which detects

an increased elevation in protein levels. This test is used in conjunction

with the presence of dementia and can differentiate between CJD and AD.

While there is no cure for either disease, the amount of time in which a

family has to come to terms with the situation is important. I am personally

aware of cases in which the patient died within 3 weeks of diagnosis. I'm

sure you can see the need to differentiate when a matter of months or years is

involved. Studies have shown that up to 13% of AD patients were actually

CJD. If just 5% of AD patients were actually CJD, this would increase the

amount of deaths per year from CJD to more than the deaths per year from AIDS.

Misdiagnosis, misinformation and misguided physicians continue to inhibit

families from obtaining accurate information and at time have prohibited

patients from getting even the most basic of medical attention. I encourage

you to publish my response in order for other physicians to have the

opportunity to review the comments and resources I have listed. Please feel

free to contact me should you have further questions.

Sincerely,

Liz Armstrong

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[Guest guest]

Dear Liz,

Your response to this letter is just excellent - Thanks for speaking for all

of us.

Yvette

[Guest guest]

Dear Liz,

Your response to this letter is just excellent - Thanks for speaking for all

of us.

Yvette