Info/Victims
These pages are dedicated to all individuals who have died of vCJD by blood or medical procedures. Its also dedicated to living victims those affected by and living with the label 'at risk of developing vCJD' due to being given contaminated blood/blood products, cells tissues, organs or by maternal transmission.
Victims their families stories, testimonies, statements and experiences will be posted here so that the public are aware just how many thousands of people in the UK and worldwide continue to be affected by this ticking health time bomb.
27th May 2010
Last week campaigner Haydn Lewis died age 53, below is a tribute to him written by Susan Watts of BBC1 Newsnight.
Haydn was given blood products which were contaminated with HIV he was also exposed to vCJD.
Haydn was a lovely guy, always smiling and whatever life threw at him he remained undefeated and upbeat. He was so thoughtful when talking about my Andrew, so sensitive to me as a grieving mum Haydn was so understanding and caring acknowledging my heartbreak despite his own pain and losses.
The world is a much sadder place without Haydn’s lovely lilting welsh accent, I will miss his courage and his humour but most of all the man who stood up for the rights of others, who couldn’t be silenced, another clear and informed voice for my Andrew and victims of vCJD.
Kenneth Clarke’s decisions during his time as Health Minister and Secretary allowed contaminated blood/blood products to be given to UK haemophiliacs, these have killed, maimed and disabled thousands many of them children under the aged of 16. Haydn like many in the UK haemophiliac community was unlawfully infected with HIV and also exposed to vCJD, due to the medicine he was given to treat his haemophilia. Kenneth Clarke has never shown any remorse about his deliberate and measured decisions that have wrecked so many lives and stolen so many futures. Hundreds have died of vCJD, thousands have died through contaminated blood products and millions of us could be carrying vCJD, and yet Kenneth Clarke continues in his role as Lord Chancellor and remains a free man?
The world is a much sadder place without Haydn and my Andrew two men with integrity, honesty and kindness.
The world is a place of no justice or democracy whilst Kenneth Clarke remains in power and head of the Justice Department……
Death of haemophiliac campaigner Haydn Lewis
Susan Watts - BBC Newsnight
Haydn Lewis, the haemophiliac campaigner who featured in a number of films on Newsnight, died this morning (Friday 21/5).
He would want me to point out that, in a timely development, a freedom of information request he had been chasing for years came through on Thursday. Haydn was told about it.
Haydn wanted to see a letter from 1990 from the-then Chief Medical Officer, Sir Donald Acheson, to Kenneth Clarke, who was then Secretary of State for Health.
This was when the government faced litigation from the haemophilia community over their infection with HIV through contaminated blood products.
The letter could prove an important missing piece in a puzzle Haydn had been putting together for years. The Information Commissioner's ruling came through yesterday - that these papers should now be disclosed, and that the Department of Health (DoH) breached the freedom of information act in its handling of this request.
The DoH now has 35 days in which to release the letter, or appeal.
Haydn died disappointed that Gordon Brown felt unable to take up an invitation to visit him, to learn about how widows of haemophiliacs often struggle to make ends meet.
Here you can see Haydn talking about this issue in his last appearance on Newsnight:
http://www.bbc.co.uk/blogs/newsnight/susanwatts/
And the rest of the haemophilia community has yet to see how the new government is going to respond to this issue.
An early sign will be how they handle a court ruling, shortly before the election, and after Haydn's last appearance on Newsnight. That ruling found in favour of composer Andrew March, also a haemophiliac. He challenged the Labour government's position over compensation in the UK, as compared with that in Ireland, and won.
Haydn had developed liver cancer following infection with the Hepatitis C virus. He had survived a liver transplant, but the cancer returned. It's hard to imagine the strength of character that drove him.
Not only was Haydn also living with HIV and the likelihood that he had been exposed to vCJD, he also lived with the knowledge that all of this was the result of contaminated blood products aimed at treating his haemophilia.
These were given to him by the National Health Service, in the 1970s and 80s, under successive governments.
Haydn wanted to understand what went wrong, and he unearthed more about this than pretty much anyone, and did so not just for himself but for scores of other families he knew who were, and are, in a similar situation.
He was a walking encyclopaedic guide to the thousands of government documents in which officials, scientists, doctors and politicians revealed how thousands of haemophiliacs became infected just like Haydn.
All the more remarkable then that Haydn became the generous man who will be missed by so many people from today.
He and his wife Gaynor struck me as more like a teenage couple, than a team married for 35 years with two sons and a grandson, on whom Haydn doted.
They were a remarkable pair. Haydn had inadvertently infected Gaynor with HIV, yet their bond was strong. They were hardly ever out of each other's sight.
Haydn was very funny, and giggled with a sometimes childish sense of humour. I spoke to him often, and he was always positive.
I'm glad we managed to speak on Tuesday, when he chuckled about having a foot massage in the hospice in Cardiff near his home. He also told me he was tired.
I'll miss Haydn. He had become a friend as well as a reliable and informed advisor.
Haydn was only 53. He had a lot more to give.
4th May 2010
Here is a photo Billy who attended the campaigns demonstration outside Downing Street on May 4th. Billy is just two and comes from Brighton his mum had a blood transfusion and fears she may now be carrying or incubating vCJD. No one can reassure her that the blood she received was not contaminated with the rogue prions that cause vCJD.
Billy represents the youth of the UK and also future generations. Don’t our children and families deserve to know our blood is safe and free of vCJD?. Why is Whitehall still delaying the development and implementation of individual blood screening tests for donors? Could it be that some of those implicated in BSE don’t want these tests as they would be culpable with thousands probably carrying vCJD as well as the hundreds who have already died?
May 2010
Guy Massey died 10 weeks after being diagnosed with variant CJD, the human form of mad cow's disease which his family believe he contracted after an eye operation years earlier
Variant CJD (vCID) is believed to be a human form of mad cow's disease and only affects a handful of people in the UK each year.
Mr Massey's family believe a cornea graft operation he had seven years ago at West Suffolk Hospital, Bury St Edmunds, might have brought on its development.
Ms Smith said he had the operation in 2001 and his family said it appeared to have been a success.
But she noticed last August he had started having problems with his memory and balance and on November 13 doctors at Addenbrooke's Hospital diagnosed him with vCJD.
Miss Smith said: "It is still such a shock that he contracted CJD. We think it must have been related to the eye operation as there is nothing else it could have been.
"It was a few years ago but then he suddenly started showing symptoms in August. We are told the main signs are staggering, a loss of short-term memory and a sweet tooth - and he had all three.
"But Guy never had any anger or was upset by what had happened. If it had been me, I would have been absolutely furious but he never had any complaints."
Angela, a medical secretary at Long Melford, said his medical cause of death was CJD and hypo-static pneumonia.
Mr Massey's heartbroken mother, Barbara, said he had fought the deadly disease with "great dignity and politeness".
"He was a wonderful son and very popular. He had more than 100 people at his funeral. We couldn't get any more in the church," she said
"Guy was wonderfully diverse and fairly outgoing, though not exuberant. It is something that never should have happened but there is absolutely no cure for CJD.
"His death was very sudden - the shock of him having basically mad cow's disease in human form was terrible. He was due to get married - it was all planned and it is so tragic."
A spokesman for West Suffolk Hospitals NHS Trust said: "We would like to offer our heartfelt sympathy to the family of Guy Massey for their loss. We are happy to discuss any concerns the family may have.
"We have checked our records and have received no complaints from the family in the last seven years. Cases of CJD are extremely rare in the UK.
"Generally speaking, people diagnosed with AIDS, cancer or CJD are not able to be donors, which reduces the risk of another person getting such diseases through a transplant."
A spokesman for the Health Protection Agency, which aims to protect people from infectious disease, said most cases of CJD have no known cause and that the iatrogenic strain, occurring accidentally through medical or surgical procedures, is very rare.
He said: "When any case of CJD is reported, the local health protection unit works closely with the National CJD Surveillance Unit which coordinates and decides of any further investigation of the circumstances of any possible cause of the patient's illness."
MAIL ONLINE
Cover up: Mark Buckland was infected with CJD from blood that was later discovered to be contaminated.
The family of a man killed by the human form of mad cow disease after being given infected blood yesterday slammed health chiefs who knew he was at risk but failed to tell him until he was dying.
When Mark Buckland started to become tired and weak, he was wrongly diagnosed with chronic fatigue syndrome because senior NHS officials decided to keep his exposure to variant CJD a secret.
It was only three years later when the 32-year-old became too ill to look after himself and began losing his memory that they finally told his family he had the incurable brain disease.
Now, as a result of his death, scientists have discovered that thousands more people could be exposed to vCJD through contaminated blood.
But his family are furious that he and 65 other patients who also received blood donated by people who later developed the terrifying degenerative condition were kept in the dark.
Yesterday his sister Gina, 35, said: "Mark spent the last three years of his life fighting to find a cure for a disease that he didn't actually have, and there were people who knew he didn't have it.
"We were told things like he might have committed suicide if he had known the truth, but he had a right to know he was going to die - he would have had the chance to do things like travel the world instead.
"They said they didn't want to make people panic, but instead they staged a cover-up, and that's even worse - it's devastated the whole family."
Their 58-year-old mother Eve added: "This research just shows they should have been more open all along - it's disgraceful."
Mr Buckland, a high-flying BT research engineer in Ipswich, had to be given 40 pints of blood when surgery for an intestinal complaint went wrong in 1997.
Unbeknown to anyone, just one pint was contaminated with variant Creutzfeldt-Jakob disease, the deadly degenerative brain disease spread by eating BSE-infected meat.
The donor who had given the blood died of vCJD in 2000, but at that point it was not known what the risk was of the recipient developing the disease.
As there was no test and no cure, a high-level Department of Health committee took the decision not to inform Mr Buckland or the other people who had received contaminated blood.
But because his own GP was not told either, when Mr Buckland - ironically a vegetarian since his teens - began showing symptoms in 2003, he was misdiagnosed with ME.
The following year he was told about his exposure, but according to his family he was told it was a "one in 1,000" risk and not anything to worry about.
By this time, Mr Buckland had had to give up work and was dedicating himself to a website supporting work towards a cure for ME.
But by January this year he was so ill he had to move in with his parents in Brighton.
As he began to lose his memory, officials finally contacted them to break the news that he had vCJD. He died in a hospice four months later.
At an inquest into his death, the coroner said Mr Buckland deserved to have been told the truth sooner.
Of the other 65 transfusion patients exposed to contaminated blood, two others are known to have developed vCJD.
Many have died from unrelated causes, leaving 24 who have now been given the facts but face an uncertain future as it is thought some carriers may never develop symptoms.
Yesterday, writing in The Lancet, Professor John Collinge, who investigated Mr Buckland's death, concluded that contaminated blood was an "efficient" route by which vCJD can be spread. He believes 14,000 people could be carrying vCJD without knowing it, and his research means they could infect many thousands more through contaminated surgical instruments.
Infection through blood donation is also likely to continue to happen despite precautions being introduced as there is no failsafe test for the disease.
Mr Buckland's 62-year-old father Peter said: "I still think if they had told him there's a chance he could have taken part in drug trials which just could have made a difference. I still feel he could be here now.
"But because of their decision he spent a lot of fruitless years setting up a website and researching an illness he didn't have. It was a complete and utter waste of time."
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