Blood

[Guest guest]

Hi a, I feel the way you do. I just don't think they know how CJD is

transmitted. They are trying to avoid another HIV/Aids problem. It is just

very hard not to feel scared that the blood product I received did not

transmit CJD.

[Guest guest]

Marie;

It continually has been stated from day one that there is no reason to

believe CJD can be spread by blood. It was even before my notification. I

don't believe they know for sure and neither does many others who are

dependant on blood products.

I would like to ask them why send out those notifications, to people who

already have either sick family members OR children who already have

medical problems. These parents come to me and ask " is their child going

to die?' The lack of information that is streamlined down to the public is

minimal to what exactly is going on. I would also like to ask them is it

fair then (if I am to believe that blood has no infectivity) to have

family members of those who have passed on because of CJD to now worry that

their family member who donated blood has infected others.

Open-mindedness is a virtue in science which they do keep open, they

realize there is a theoretical risk and want to confirm/deny this and that

is why they are doing the studies.

I believe they jumped the gun on this one and should of waited for more

results and answers before being so adamant that blood does not transmit

CJD. Presently there are 2 cases written up as possibility of blood

transmissability. One was Canadian and he died 8 months after receiving

CJD blood, the reasoning blood was ruled out was the lack of incubation

time. I would ask what surgery he had etc. The other case I have not been

able to get any data but it is written in Medical Journals and I will find

references for it.

I am not saying who is right and who is wrong but if I am to believe them

my son's notification was a farce and should never of been given and

neither should of thousands of others. The emotional turmoil that this

notification provides is hard to explain. I know Deb, Z, Maura R.

would know how it affected me, it was they who helped me understand and

realize that it is only theoretical.

I apologise for the length of this one.

a G.

[Guest guest]

Great idea, Liz, but I thought that the CJD victims' family ban had been

lifted by the blood banks.

Beverly G.

Bev:

I am not positive about the USA situation(I have a hard time just keeping

up with the changes in Canada) but families are still deferred just like

HGH and dura mater from blood donations. I plan on addressing the

reasoning for this when I attend the conference in Vancover in May(Open

Forum on Variants of CJD and Issues for the Blood System). I also want to

know why they now allow the blood in pooled plasma products but do not

allow it in individual units. As I believe their thoughts on this are if

it is pooled the infectivity is decreased.

a G.

[Guest guest]

I think they still defer family members. The lift was for pulling donations

made by someone that was later found to have CJD. In other words it's ok to

use someone's blood that died from the disease but not ok to use someone's

blood who may get the disease? Didn't make a whole lot of sense.

Liz

In a message dated 4/19/99 10:36:08 PM Central Daylight Time,

guntah@... writes:

<<

Great idea, Liz, but I thought that the CJD victims' family ban had been

lifted by the blood banks.

Beverly G.

Bev:

I am not positive about the USA situation(I have a hard time just keeping

up with the changes in Canada) but families are still deferred just like

HGH and dura mater from blood donations. I plan on addressing the

reasoning for this when I attend the conference in Vancover in May(Open

Forum on Variants of CJD and Issues for the Blood System). I also want to

know why they now allow the blood in pooled plasma products but do not

allow it in individual units. As I believe their thoughts on this are if

it is pooled the infectivity is decreased.

a G. >>