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The nightmare of variant CJD

Peter Hall
Peter Hall: Died from "evil and strange" disease  

In this story:

Doctors mystified

An 'evil and strange' disease

RELATED STORIES, SITES Downward pointing arrow

The report into the government's handling of the BSE outbreak -- or mad cow disease -- has come too late for at least 84 people in Britain who have been struck down by new variant CJD (Creutzfeldt-Jakob disease), the human manifestation of BSE.

Two years ago Zoe Jefferies was a happy, active teenager, before she began to show the first signs of variant CJD.

First came the continuous screaming, then pains in her legs that rapidly worsened until finally she couldn't walk.


Robin Oakley:
"The report criticises the British government"

253kb/23 sec. WAV sound


Nick Brown:
"The government did not lie to the public"

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Tim Yeo:
"I am truly sorry for what has happened"

281kb/25 sec. WAV sound

It took months for doctors to diagnose her condition. And then her mother Helen found she had another battle -- to get the help her daughter needed.

It could not have come at a worse time. Helen's husband had recently died, leaving her to cope alone with four young children.

Doctors mystified

Zoe is believed to have contracted the incurable disease from eating contaminated beef. Just a few years ago British government ministers were assuring the public that beef was safe.

Zoe's mother Helen is devastated. "I took the government's word. We were told it was safe, we had no need to worry, so I didn't. But if I knew then what I know now ... I won't allow my kids to touch any meat now," she said.

Annie McVeigh, whose daughter Claire died of CJD earlier this year believes the British government should compensate victim's families.

"Words are cheap. If we don't see some action (from the report) we'll make sure we do somewhere down the line," she said.

An 'evil and strange' disease

Watching her vegetarian son die from the human form of mad cow disease was a nightmare for Frances Hall.

Throughout his illness -- as Peter was reduced from a healthy 20-year-old to being unable to walk or talk and then to die bedridden -- Mrs Hall was repeatedly told Peter did not have vCJD.

She cared for Peter for almost a year before "he died in front of my eyes."

She now says no-one else should be allowed to suffer as Peter did as he succumbed to vCJD.

"It was a nightmare ... I can only hope that he wasn't aware of what was going on," she said, adding that Peter became a vegetarian when he was 15.

"We asked many times throughout the illness: 'Was there a possibility that he had vCJD?' We were told it wasn't a possibility, he was far too young and the symptoms were wrong." She described the disease as "evil and strange."

More than four years after scientists discovered a link between "mad cow disease" and its human equivalent, doctors are still mystified by the illness for which there is no cure. Of the 84 people infected by new variant Creutzfeldt-Jakob disease more than 70 have died and no-one is sure how many others may be harbouring the disease. Estimates of new infections range from hundreds to millions -- a compensation pledge would have been be akin to writing a blank cheque.

Reuters contributed to this report.

CJD on the increase
August 4, 2000
Coroner: BSE killed vegetarian Hall

UK Ministry of Agriculture
UK CJD Surveillance Unit
WHO guidelines on Transmissible Spongiform Encephalopathies
The BSE inquiry

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