Autopsies and Diagnosis

[Guest guest]

I am not a nay-sayer, but I must comment one more time that if directives are

issued that CJD is infectious after an autopsy occurs:

1. You can kiss any more firm dignosis and statistical reporting goodbye.

There won't be any cases that will hold up under scrutiny on a state level or

by the CDC if there aren't autopsies to prove it. I have experienced this

first hand.

2. There won't be any families who will agree to an autopsy if they know that

their family member will not be embalmed and therefore will not be allowed to

have a regular funeral service. It isn't going to happen. It is hard enough

right now to convince families to agree to such an invasive procedure after

their loved ones have gone through so much. If their final goodbye is taken

away, they aren't going to give a damn about future CJD research, but rather

the here and now. If we had been told that my father would not be allowed

to be embalmed after autopsy, we would have NOT agreed to the autopsy. They

are playing with human emotion here.

3. How do you think the funeral directors in this country are going to react

to CJD victims if they are told by a supposedly reliable organization that

they are at risk?

I am going to find out who is behind these new " findings " in CJD research. I

will challenge them to cite specific medical and scientific tests that were

performed to prove that CJD patients are infectious after autopsies are

performed. If there have been no new studies proving this, then they are

completely without merit and should not be passed off as fact. We are

dealing with science here and it absolutely infuriates me that this

information (whether it be fact or fallacy) is being handed down as gospel.

We have come too far to allow the door to be slammed on accurate statistical

reporting. By the way, does anyone know that someone from the CDC told one

of our Voice members that the one-in-a-million statistic is based on the

chance that you will live to be 100?? In other words, if you don't live to

be 100, your odds become greater that you will succumb to CJD. I don't want

to quote the person at this point because I received this information

second-hand and I haven't proven it yet. Food for thought. The semantics

game again.

It seems very strange to me that all of a sudden, now that young cases of CJD

are emerging (does everyone remember the fact that nvCJD hits YOUNG

people??), the rules are changing. Pat hit the nail on the head when she

said that US government agencies dread the day that we will find BSE in this

country and you can be darn sure that they are going to do everything in

their power to keep us from finding it. Please remember that nvCJD victims

are only diagnosed as such from AUTOPSY. This is such a simple ploy to curb

progress in the field of CJD and nvCJD research.

I wondered how the FDA and CDC would counteract our petition. Now I know.

They are going to play hardball with us and they make the rules.

I don't care about the feelings that are " hurt " in government because of

accusations. I don't care if they take this personally. My feelings are

" hurt " because my dad died from a horrible, nasty brain-eater. This is

business. It is their job to protect the welfare of the citizens of this

country. I agree with the fact that if CJD is infectious, then medical people

who handle them could be at risk; however, if the CDC is allowed to skew the

statistics, we will NEVER know who has the disease for sure. Remember, the

CDC says that this is a one in a million rarity. Do we assume that they have

discovered that CJD victims are predominately medical people? I think out of

CJD Voice, we have maybe 3 or 4 victims who were in the medical profession.

Without accurate statistics, the CDC will have done the entire country a

disservice. You could be the next person who is operated on after a CJD

victim. We won't know because these cases will go unreported.

Reread the petition and find out exactly what it says about the CDC and their

lack of concern. It is a life or death situation. It involves the health

and welfare of each and every person in this country. Am I angry? You damned

right I am. I have promised my dad that I would make a difference. We

should consider what we are here for. If we want to make a difference, then

we are going to have to move forward. Otherwise, we lose.

Beverly G.