Did she have Alzheimer's Disease or Human Mad Cow Disease?

(14 Posts)
Beaaware Thu 13-Dec-12 10:44:18

This story is worrying, doctors, consultants could not identify what was wrong with Audrey Cook aged 72 she displayed the symptons of Alzheimer's Disease but actually had Human Mad Cow Disease, her death would have been down as Alzheimer's if her family had not insisted that a brain autposy was carried out:

http://www.salisburyjournal.co.uk/news/new-forest/news/4576821.Campaign_for_vCJD_blood_screening/

Audrey had a disease which is transmissable, she was an active blood donor, we will never know how many people have been infected via her blood, the recipients of her blood are now at high risk of developing vCJD, this could be hundreds of people.

Even more worrying is that not one expert could diagnose Audrey's condition, clearly Audrey had very similar symptons to Alzheimer's disease.
How many other people with Alzheimer's Disease actually have vCJD?
We have a epidemic of Alzheimer's Disease in the UK, many are under the age of 65. some as young as 42, many in their 50's.

Could they as in Audrey Cook's case be being mis-diagnosed?

claig Thu 13-Dec-12 11:25:14

Original link didn't work for me. Following link works

www.salisburyjournal.co.uk/news/newforest/news/4576821.Campaign_for_vCJD_blood_screening/

Why don't the screen blood donations for vCJD. Is it to do with expense?
What do they screen blood donations for? Do they screen for HIV etc.?

How expensive is screening?

Tamisara Thu 13-Dec-12 11:36:36

I didn't think they could test for vCJD, which is why you can't (currently) donate if you've had a transfusion.

The link says they are evaluating one, so hopefully it may be possible in the future.

WhoKnowsWhereTheMistletoes Thu 13-Dec-12 11:39:23

Even if they could there is a fear that it would put people off donating as they would have to be told if there was a positive result.

claig Thu 13-Dec-12 11:44:38

Just tried looking for official figures of causes of death etc.

It seems, in the UK, that there are about 60 deaths per year of vCJD, 680 deaths per year of AIDS and 60,000 deaths a year are directly attributable to dementia.

'Even if they could there is a fear that it would put people off donating as they would have to be told if there was a positive result.'

But isn't health paramount?

claig Thu 13-Dec-12 11:46:58
mignonette Thu 13-Dec-12 11:50:16

Prions very hard to test for. I had 3 units of plasma during my DS's birth and have to accept that I have been exposed to the unscreened blood of countless well meaning donors who may or may not have consumed large amounts of fairground burgers in the past! However i would have died without the plasma so I feel the extra ?? years of life with the attendant possible risk of dying of nvCJD a decent exchange- or the only one at the time.

Pooka Thu 13-Dec-12 11:57:27

Ds2 had a blood transfusion Post natally.

It's a worry, but the more immediate concern at the time was his illness and the fact that a small (80ml) transfusion could prevent him from becoming even more anaemic and having potentially fatal complications.

I regularly give blood, as does dh. I'd see screening as an advantage to giving blood, in the same way that it's interesting to me to get confirmation by being able to donate that my iron levels are ok. I similarly found the ante natal loos tests to be reassuring.

CFSKate Thu 13-Dec-12 12:28:57

ISTR both Alzheimers and BSE have been linked to organophosphates.

WhoKnowsWhereTheMistletoes Thu 13-Dec-12 12:34:16

I agree that health is paramount but I would certainly think twice about donating if screening was introduced, as there is no proper treatment at the moment I'd rather not know if I was headed for vCJD. I don't mind the other screenings because if anything is found something can be done about them.

Beaaware Thu 13-Dec-12 12:40:40

Nobody should be exposed to possible contaminated blood, donating blood is a fantastic thing to do, but what is very concerning is that the department of health are NOT protecting you or I from the very real risk of contaminated blood from people like Audrey Cook.
Audrey appeared to have Alzheimer's disease, she was able to donate her blood.
How many others with Alzheimer symptons are active blood donors?
Is it time for our Department of Health to test every single blood donor for vCJD, they can do it here is the link to the blood test which every UK neurologist is aware of:

http://www.prion.ucl.ac.uk/clinic-services/investigations-tests/#BloodTest

this test has been in use since February 2011, why it is not in use in all GP surgeries, hospitals and blood donor sites is a mystery to me. They can test you for other trnsmissable diseases such as AIDS, Hep B & C, so why not vCJD?

I hope there are not too many more Audrey Cook's donating their blood, she never knew she was doing anything wrong.

I followed your link - this is part of what they say -

"The test is at an early (prototype) stage ... it raises a number of issues which need to be carefully considered... It is important to be cautious about this news.... [Further research] will be vital before a version of this test could be considered to routinely screen healthy blood donors."

So, even the people who are developing this test do not believe it is yet ready to be put into general use. If/when the researchers think it is ready, it would be looked at by the NHS for them to weigh up the evidence. Only then might it be used to test every blood donor.

Beaaware Thu 13-Dec-12 13:30:39

The Prion Clinic say that they receive on average 12 referrals a month to test people for human mad cow disease. I guess if Audrey Cook was alive today she would one of these referrals .

The test has been available to all neurologists in the UK since February 2011, so they presumably are referring people like Audrey for this test on a regular basis.

As and when this blood test will be freely available for all, who knows, my worry is that it will never be made widely available to all due to the compensation scheme currently available to families where a person has vCJD and the possible litigation that may arise.

Lets hope that anyone with Alzheimer's disease symptons is not actually suffering with mad cow disease as was the case with Audrey Cook aged 72.

BartletForTeamGB Thu 13-Dec-12 18:40:16

I played a little game with myself - who would be posting this? And guess what, I was right!

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