CJD: Anguish of a victim's family

Clare Tomkins died of CJD two years ago

As the Department of Health announces the results of a study into the new form of CJD, BBC News Online tells of one family's loss.

Clare Tomkins was a happy, healthy young woman before she became infected with the new form of CJD.

Tragically for her family, she died two years ago - one of 53 people to die from the disease so far.

The most harrowing thing was when she was in bed and would howl like an injured animal.

Roger Tomkins

Her father Roger says her death was particularly difficult because nobody was able to explain to the family what was happening to Clare as her condition worsened.

And attempts to prevent her dying were hopeless.

He told the BBC: "For us as a family, it was quite devastating because there was not a doctor or anybody that could tell us why our lovely daughter was going down hill in this way.

"Therefore she was continually going down hill without any rectification at all.

"There was no drugs and no therapy. Although she was having this, it was having no effect."

'Why my daughter?'

He told the inquiry into BSE: "When I drive through London, I look at football matches and see 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."

Roger Tomkins: It was devastating

In the space of just six months, Clare was reduced to a wreck of a human being who could not control her movements, cowered in fear from members of her own family and howled at night like an injured animal.

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".

Mr Tomkins said their doctor treated Clare with anti-depressant drugs. She became frail and fragile, displaying "childlike" behaviour, and developed a nervous laugh.

Eventually, Clare was admitted as an in-patient at a clinic where a psychiatrist began to doubt the diagnosis of acute anxiety and called in a neurologist for another opinion.

When Mr Tomkins subsequently visited his daughter at the clinic he found her "in a terrible state" and took 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.

"She walked in a thoroughly unco-ordinated 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."