Businessman dies from CJD

A SUFFOLK businessman has died from the human form of mad cow's disease just months before he was due to marry.

Dave Gooderham

A SUFFOLK businessman has died from the human form of mad cow's disease just months before he was due to marry.

Guy Massey, of Edwardstone, near Sudbury, died just ten weeks after he was told he had the rare Creutzfeldt-Jakob Disease and eight months before he was due to marry later this year.

His devastated fiancée, Angela Smith, who acted as a 24-hour carer for her partner during the final stages of his illness, revealed they were able to have their relationship blessed before Mr Massey, 53, died on January 28 this year.

His mother, Barbara, said he fought the disease, with “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. He was wonderfully diverse and fairly outgoing, though not exuberant,” she said.

Most Read

“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.”

Variant CJD (vCID), believed to be the human form of mad cow's disease, is extremely rare and affects only a handful of people each year.

Family members are unsure whether a cornea graft operation he had seven years ago at West Suffolk Hospital might have been connected with the disease.

But hospital chiefs last night said cases of the disease were extremely rare and encouraged the family to get in touch with any concerns they might have.

Miss Smith added: “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 he 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.”

Mr Massey had the operation at the West Suffolk Hospital in 2001 and his family said it appeared to have been a success.

Then in August last year, Miss Smith noticed that he had started having problems with his memory and balance and on November 13, doctors at Addenbrooke's Hospital diagnosed him with vCJD - a relatively new strand of the disease.

His fiancée, a medical secretary at Long Melford, said his medical cause of death was CJD and hypo-static pneumonia.

A spokesman for the 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 added: “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.”

At Mr Massey's packed funeral in Little Waldingfield, near Sudbury, his best friends recalled in an eulogy how he leapt into action when news broke about the plight of Romanian orphans following the collapse of the Ceausescu regime in 1989.

They said: “He wanted to do more to help others less fortunate than himself. Guy contacted one of the groups running the convoys and drove one of their vehicles across Europe to deliver supplies.

“For the next convoy, Guy adapted his own lorry and took tons more supplies to the orphans. Not that Guy was boasting or wanting praise - he was too modest for that. Guy was a great friend who would do anything for anybody and for whom nothing was ever too much of a problem.”

Mr Massey, who has a sister Alix , was well-travelled and helped organise the South Suffolk Show - following in the footsteps of his father Major Peter Massey - while running a welding and engineering business building fire escapes and ladders.

He then diversified into journalism and photography and wrote for a specialist marine civil engineering publication.

His eulogy paid tribute to his love of animals where his home in Edwardstone was opened for rescued rottweilers and his family asked for any donations to be made to a canine charity of his choice.

His funeral in Little Waldingfield on February 8 saw a Land Rover he passionately restored used as a hearse and his body buried in an environmentally-friendly coffin, as he requested.


* Creutzfeldt-Jakob disease (CJD) is a very rare and incurable degenerative brain disorder that is ultimately fatal.

* Often referred to as prion diseases, CJD is the most common human form but is still rare and only occurs in about one out of every one million people.

* It usually affects people aged 45 to 75 years old but the exception to this is the more recently-recognised variant CJD (vCJD), which occurs in younger people.

* The first symptom of CJD is rapidly progressive dementia leading to memory loss and accompanied by physical problems such as speech impairment, jerky movements and problems with balance and coordination.

* There is currently no cure for CJD and the search for viable treatments continues.