Education about 14-3-3 Spinal Fluid Test Can Increase Number of Known Cases

[Guest guest]

If we want to increase the number of known CJD cases it is important we

educate health care professionals and the general public about the 14-3-3

spinal fluid test since many people will not allow an autopsy under any

circumstances. We will then not be aware of these cases. I was thinking of

one group of people we easily lose now. Those are the Orthodox Jews and other

non-Orthodox Jews who follow Jewish law on this issue. Many eat diets that

contain risk meats such as tongue yet wil not allow an autopsy under any

circumstances and in the United States since there is separation between

church and state they cannot be forced to do this. Also, I've known of many

Alzheimer cases in the Jewish community where the people have since died and

whether some of them are really CJD I do not know. There are probably other

similar groups around. Therefore, I want to encourage everyone who feels it

is important to get as accurate number as possible of actual CJD cases to

inform as many health care professionals as you can about CJD and the 14-3-3

test as possible. (I realize the 14-3-3 test is not 100% accurate but it will

pick up more cases than if no procedures are done.) Also, the general public

whenever possible. I know there are brain biopsies available too but it seems

people are less likely to want to do these and health care workers are less

willing to want to perform this procedure because it is dealing with brain

tissue. Also, once the person has passed away many people feel, and I can

definitely understand it, that they and the victim have been through enough

and don't want to deal with an autopsy.