A Really Sad Story About
A BSE/CJD Victim

A father has been praised for his courage after giving a vivid, harrowing account to the inquiry into "mad cow disease" of how its human form has destroyed his daughter.
The inquiry, chaired by Lord Justice Phillips, is trying to establish why the crisis was allowed to develop.
Roger Tomkins said his 24-year-old daughter Clare had enjoyed life to the full, loved animals and was looking forward to getting married.
But in the space of just six months she was reduced to a wreck of a human being who could not control her movements, cowered in fear from members of her family and howled at night like an injured animal.
Mr Tomkins, an engineering firm managing director from Tonbridge, Kent, said it was only after extensive psychiatric treatment that his daughter was discovered to have the new form of CJD, thought to be triggered by infected beef.
He told the inquiry in London that Clare had been a strict vegetarian since the age of 13.
He described how her symptoms began with depression and a bad taste in her mouth.
Now she is bedridden and has to be cared for night and day at home. Since there is no cure for the disease, she will die.
As Mr Tomkins gave his evidence - keeping his composure throughout - relatives of other New Variant CJD victims attending the hearing wept openly.
At the end he was congratulated for his courage by Lord Justice Phillips and given a spontaneous round of applause.
He told the inquiry he believed risks had been taken over BSE.
Mr Tomkins said he first noticed that Clare was not herself in October 1996. She had returned from a holiday with her fiancé in an uncharacteristically depressed mood.
She began to lose weight, became increasingly depressed to the point where she was crying for no reason and could no longer face her job in the pet department of a local garden centre.
The following year, her ability to walk began to suffer and she started falling over and complaining of dizziness.
Clare's condition quickly worsened. Her handwriting, which was large and flamboyant, deteriorated into an "indecipherable scrawl".
'Childlike' behaviour
Mr Tomkins said Clare was treated with anti-depressant drugs by her doctor. She became frail and fragile, displaying "childlike" behaviour, and developed a nervous laugh.
By the end of January 1997 Clare was referred to a psychiatrist. Her movements became more and more agitated and bizarre.
Clare was admitted as an in-patient at a clinic. But eventually the psychiatrist began to doubt his diagnosis of acute anxiety and called in a neurologist from the Kent and Sussex Hospital, Tunbridge Wells.
Brain scan gave no clues
When an MRI brain scan failed to reveal any physical abnormalities it appeared to confirm the belief that Clare's problem was psychological.
Mr Tomkins told the inquiry how Clare's illness took a turn for the worse after he had found her "in a terrible state" at the clinic and brought her home.
He said: "Her hands started to turn inwards. Her feet started to turn inwards also. She became completely knock-kneed. Her hips would become disjointed. If this occurred she couldn't walk unaided. Her head movements became more and more frequent.
"She walked in a thoroughly uncoordinated fashion and cried constantly. The most harrowing thing was when she was in bed and would howl like an injured animal. She looked at you as if you were the devil incarnate."
At times Clare was unable to recognise her mother Dawn and cowered away from her in extreme fear.
Clare was physically and mentally exhausted. She was taken to the Kent & Sussex Hospital accident and emergency department unconscious.
Violent outbursts
At the hospital she was prone to violent outbursts, kicking anyone who approached. She became doubly incontinent and had to be fed through a tube into her stomach.
A decision was taken to section Clare under the Mental Health Act for her own safety.
Mr Tomkins said further meetings of experts led to the suspicion that Clare may be suffering from CJD.
'Why my daughter?'
She was taken to St Mary's Hospital in London, where Professor John Collinge, a leading expert on CJD, examined a sample taken from her tonsils. This confirmed that Clare was suffering from new variant CJD.
Mr Tomkins was asked if he questioned why his daughter had become a victim.
"When I drive through London, I look at football matches and see hundreds and hundreds of thousands of people, and I think, 'Why my daughter?' As I am sure the other families think the same. It is such a minuscule risk, but it has happened. And the results of that risk are terrible."
Vet 'forced to tone down' evidence
Earlier during the hearing, a veterinary surgeon recalled how a senior Ministry of Agriculture official forced him to tone down a research paper at the start of the epidemic.
Veterinary surgeon Colin Whitaker, from Ashford in Kent, claimed he was forced to alter a scientific paper on BSE in which he described the disease as a "new scrapie-like syndrome".
Scrapie is the spongiform encephalopathy disease suffered by sheep.
Mr Whitaker said he was made to cross out the words "scrapie-like" before presenting the results to a meeting of the British Cattle Veterinary Association.

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