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Re: Fwd: Incidence of CJD

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In a message dated 2/18/99 1:54:19 PM Eastern Standard Time, alexwade@...

writes:

<<

If autopsies can not be guaranteed to be safe to the practitioner, and they

are made mandatory by this petition, aren't you asking for many pathologists

to be exposed to this disease? >>

,

Pathologists should use precautions (see the NOVA program " The Brain Eaters " )

not only for autopsies but surgeons removing the appendix, spleen, tonsils,

etc. How do you know the patient is not harboring CJD? The medical

profession has to learn more about CJD............Pat

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writes:

<

>

According to everything I have read and researched, CJD is no more prevalent

in pathologists than in the general population. If you have proof to the

contrary, I would like to have it. Otherwise, why would you think there is

any added risk if the pathologist follows published guidelines for CJD

autopsies? (i.e. masks, suits, double gloves, etc). To say that no one should

autopsy CJD victims because of unproven risks is just like the ostrich who

puts his head in the sand and sees nothing.

<

>

Why don't they understand this disease? I certainly have a good understanding

and I am just a concerned family member with zero medical schooling. It seems

to me that it is their job to understand this disease!! I am certainly glad

that pathologists weren't allowed to take this attitude with the AIDS crisis

in the 80s.

Beverly G.

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This a catch -22- if numbers are so low -no money for research---if there was

a simple -non-invasive test -the numbers would be much higher---more people

would be tested---------------If there was a treatment-more Doctor's would be

educated on the disease-- by detail men (or women) from the drug

companies---there is no money to be made as it stands now---but it is a threat

to several industries now ---industry hates change or loss of revenue

--------------

All i know is in the county where i live (60,000) there were 3 cases in one

year--

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If autopsies can not be guaranteed to be safe to the practitioner, and they

are made mandatory by this petition, aren't you asking for many pathologists

to be exposed to this disease?

Will it be worth it?

How many pathologists need to be exposed to a risk they don't understand for

the sake of making a point? What will you say when their wives and children

are joining CJDVoice to find out more about the disease that killed their

loved one because of a forced autopsy?

> -----Original Message-----

> From: BevAlso@...

>

> In a message dated 2/18/99 12:05:43 PM Central Standard Time,

> APE826@...

> writes:

>

> <

and wont be unless mandatory autopsies are performed on

> Alzheimer's and other

> dementia patients.>>

>

> Good point, Pat. However, I think we need to go a step backward and also

> demand mandatory continuing education of ALL medical personnel to

> update them

> on the symptoms of CJD. Hopefully, then, autopsies will be

> easier to obtain.

> Beverly G.

>

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,

Hang in there. Learn everything you can and be an advocate for each and every

patient you care for by supporting them and caring for them regardless of

their diagnosis.

I am a nurse and I do not look at diagnosis. I look at and treat the patients.

Funny, I never lack for satisfaction from my job.

Marie

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,

Please don't get so defensive that you close your mind to what we are saying.

A lot of the ranting and raving that goes on here is a reaction to real or

perceived ignorance in the medical community that we have had to deal with.

My family's experience was by and large a good one, especially with the nurses

who were incredible to both my mother and us during her illness and death. My

mother's primary care physician was truly heartbroken to hear about her death

and disturbed by her own ignorance about CJD. She thought that my mother was

a hypochondriac, and to be honest, we were thinking the same thing. I did

take exception to the neurologist who didn't want to keep her in the hospital

to observe the progression of her illness, because as he said, " We have all

the data we need. " That rattled me to the point of wanting to punch him, but

my father understood that it was not his specialty and he was not interested

past the point where he'd made a diagnosis. It's hard to hear that though

when the person he's referring to has given birth to you, and you're hearing

her basically being written off.

Sheryl

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