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John Williams
"I was shattered"
 real 28k

Saturday, 21 October, 2000, 23:36 GMT 00:36 UK
When CJD strikes: A father's story

John Williams watched his lively daughter Alison as her life was wrecked, then ended by vCJD. He tells BBC News Online his story.

Many CJD victims have mood changes that precede their actual physical decline - and John Williams noticed how his young daughter Alison's character gradually changed.

When she left her college course abruptly, and began to become more introverted, he put it down to worry for her mother, who was seriously ill at the time.

She was like a mountain goat, she'd run up Snowdon

John Williams
"She was in a top stream at college and she just packed it in for no reason at all."

He did not think there could be a physical problem - after all, she still enjoyed activities like sailing, golf and hiking in the mountains near her home in Caernarfon in north Wales.

"She was like a mountain goat, she'd run up Snowdon" he said.

However, her psychological problems continued to worsen.

John said: "She progressively got worse - she didn't want to meet people except close friends."

Alison's mother's heart condition became terminal, and she died in 1994. The apparent psychological problems were joined by physical symptoms.

"If she walked she'd walk with a goosestep - we noticed she couldn't walk in a straight line, she was veering off all the time."

Alison secured a job but collapsed at work only a month later - doctors diagnosed acute depression, and a few weeks were spent in hospital.

Now the behaviour became stranger - Alison was running baths but never getting in, and sleeping inside her quilt instead of under it.

She was also beginning to lose weight, but instead of diagnosing anorexia, a psychiatrist said that the problem wasn't mental, and called in a neurologist, who called in a genetics expert.

Finally, the diagnosis was made.

John said: "He said he was 90% certain that Alison had CJD but this couldn't be confirmed until she died.

We didn't eat that much meat because my wife wasn't very partial to it

John Williams
"I was broken hearted, of course. I was shattered from that point of view. I realised what the implications were."

Alison became more seriously ill, and in November 1995 went into hospital. She never came out.

"She had to be fed, watered and everything. She became progressively worse."

After Christmas that year she suddenly went blind. in February she died at the age of 30.

John, living on his own, was in despair: "I'm quite a strong willed indivual - if I was not, I'm pretty certain I could have committed suicide."

Instead, he channelled his energies into learning more about vCJD and its causes, and helping other families whose relatives had just been diagnosed with the illness.

Ultimately I blame the government of the day.

John Williams
He does not believe that his family's diet at home was the source of Alison's vCJD.

"We didn't eat that much meat because my wife wasn't very partial to it. We ate more lamb than beef."

He thinks that a brief sojourn at college led to a diet of cheap cuts of meat in fast food, and was probably the source.

Five years on, he is hoping that the BSE inquiry report will be acted on to ensure that such an event never happens again.

"There's a massive coverup somewhere and ultimately I blame the government of the day.

"I felt sorry for the farmers in many ways - but there are rogue farmers like there are rogue car dealers.

"The scientists simply don't know how many more deaths there will be - but one death is too many."

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See also:

20 Oct 00 | Health
Polio vaccine in BSE scare
05 Mar 00 | Health
CJD threat to mothers
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