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13 November 2014
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Andrew Black

Andrew Black

Variant CJD

Joe Crowley goes behind the scenes of Inside Out's film about variant CJD. We first filmed Christine Lord in September 2007, just a couple of months after her son Andrew was diagnosed with variant Creutzfeldt Jakob Disease.

Joe Crowley's filming diary...

For me and friends of my age, Mad Cow Disease seems like a distant nightmare - something that haunted us on the news as we grew up.

Brain section with CJD c/o BBC Science Library

Brain section with classic CJD.

But this Inside Out programme has made me think again and, sadly, given the disease a painful new relevance.

It's about a young guy like me, starting out on a career in the media, when he was struck down by the human form of the disease.

And it's a story of his mother's relentless search for answers, as she tries to find out who killed her son.

vCJd fact file

Creutzfeldt-Jakob disease is a rare and fatal progressive degenerative brain disease. It is one of a group of diseases which affect humans and animals called Transmissible Spongiform Encephalopathies (TSEs). TSEs are believed to be caused by the build up of an abnormal form of the naturally occurring 'prion' protein in the brain

CJD was originally described in its classical form in 1920. A new variant - called variant CJD (vCJD) - was first identified in 1996. Variant CJD is strongly linked to exposure to a TSE of cattle called Bovine Spongiform Encephalopathy (BSE), probably through food.

Source - Health Protection Agency.

Moving and harrowing story

We started filming Christine Lord in September 2007, just a couple of months after her son Andrew was diagnosed with variant Creutzfeldt Jakob Disease (vCJd).

Andrew had been a fit and healthy radio producer, but the disease was already damaging his mind and body.

He was unable to walk more than a few steps and struggled to speak above a whisper.

Christine borrowed one of our cameras, so that she could film Andrew at home and record her thoughts.

These video diaries provided a moving insight into the harrowing months that followed as Christine cared for her son.

Christine's a freelance journalist, so she used her spare moments to look into the history of BSE and the possible causes of vCJD.

While Andrew slept, she researched the disease that was killing him.

Voice in the wilderness?

We also followed Christine as she visited Pitsham Farm near Midhurst, where the first cow was spotted with Bovine Spongiform Encephalopathy (BSE) in 1984.

The farm is just 30 miles away from Christine's home in Southsea, but it was the furthest she had been from Andrew since he was diagnosed.

Christine Lord and David.

Emotional meeting - Christine and David.

Vet David Bee told Christine how he labelled the disease "Pitsham Farm Syndrome" after seeing eight cows with similar symptoms.

"We had a range of clinical symptoms. We had cows that were aggressive, cows that had lost weight and cows with head tremors. And we weren't seeing those anywhere else."

For Christine, the vet's description is distressingly familiar: "The symptoms you have described are exactly what I have been experiencing with my son.

"I have to be his voice in the wilderness because it feels like we've been forgotten, that the broader public have forgotten about it, but everyone over the age of 10 has been exposed to this."

Search for the truth

Christine's search for the truth also took her to London to see the man leading the search for the cure.

Professor Collinge

Search for truth - Professor Collinge.

Professor John Collinge and his team at the Prion Unit have managed to reverse the disease in mice.

It's too late for Andrew, but Professor Collinge thinks a similar treatment for humans might be just a few years away.

He also tells Christine how the government "leaned on" scientists who tried to speak out about the health risks of BSE in the early '90s.

"I had phone calls from government departments in somewhat intimidating tones. They left you in no doubt that you weren't making yourself very popular."

Confronting the politicians

Christine's most testing encounter was with the politician who will always be associated with the BSE crisis.

Agriculture Minister John Gummer attempted to convince the public that beef was safe by feeding a burger to his daughter Cordelia.

John Gummer and Cordelia with burger

Safe to eat? John Gummer with Cordelia.

The BSE inquiry concluded that the government's campaign of reassurance was a mistake, but it didn't criticise Mr Gummer for his role in the crisis.

At a highly charged meeting, Mr Gummer tells Christine that he took the right decisions based on the knowledge he had at the time.

"At every point and on every occasion, I sought to make the best choice and best decision I could for the safety of myself, my family and my country."

He strongly denies Christine's suggestion that the Government relied on selective scientific research.

"No scientist of any kind was stopped by me from giving their information. I only wanted to know the facts."

For more information...

The CJD Support Network's website is www.cjdsupport.net and their 24 hour helpline is 01630 673973.

last updated: 03/12/2009 at 12:28
created: 02/05/2008

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