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BBC News Online: Health
Sunday, 2 December, 2001, 02:50 GMT
First CJD drug trial patient dies
Rachel Forber had initially responded well to treatment
A British woman who became the first human guinea pig in trials to find a cure for variant CJD has died.
Rachel Forber's condition improved dramatically after she received a course of drugs from the Nobel Prize-winning scientist who discovered the cause of the human form of mad cow disease.
It is thought Rachel, 21, was taken off the drug, Quinacrine, after complications set in and affected her liver.
Following Rachel's death, at home in Newton-le-Willows, Merseyside, her step-father, Jason Taylor, said: "Rachel died earlier today. We don't want to say any more."
Bed-ridden
The former Royal Signals soldier was diagnosed as suffering vCJD six months after she began showing signs of depression last Christmas.
People may say, why did you put your daughter forward? I've always said from day one that I had nothing to lose but everything to gain
Stephen Forber
She quickly deteriorated from a happy, active young woman, to a bed-ridden invalid requiring constant care.
Rachel could not recognise members of her family, stand noise or sunlight or feed or dress herself.
Her father Stephen contacted Professor Stanley Prusiner, who invited her to his San Francisco clinic to become the first human to try Quinacrine.
She started taking it in August and within three months she was able to get out of bed, walk unaided and even swim without support.
'Nothing to lose'
When Rachel started taking the drug her father said he knew it was a last chance.
Mr Forber said: "I spoke to Rachel's neurosurgeon who told me that the drug hadn't even been tested on animals. I said, 'I know'.
"People may say, why did you put your daughter forward? I've always said from day one that I had nothing to lose but everything to gain.
"When I signed the consent form for the treatment, what could I lose?"
Related to this story:
Father's plea for CJD drugs trial
(16 Aug 01 | Health)
School meals link to CJD deaths
(16 Jul 00 | Health)
CJD scientists probe abattoirs
(15 Jul 00 | Health)
Village deaths raise mad cow fears
(14 Jul 00 | Health)
BSE research funds 'misdirected'
(23 Oct 00 | UK)
Internet links:
CJD Surveillance Unit |
Department of Health |
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