CJD claims life of woman, 23
Grieving parents spoke last night of how the human form of mad cow disease claimed the life of their talented daughter.Elizabeth Smith, 23, died on October 4 at her home in St Margaret South Elmham, near Harleston, after a long battle against the degenerative illness.
Grieving parents spoke last night of how the human form of mad cow disease claimed the life of their talented daughter.
Elizabeth Smith, 23, died on October 4 at her home in St Margaret South Elmham, near Harleston, after a long battle against the degenerative illness.
She was first diagnosed with new variant Creutzfeldt-Jakob disease (nvCJD) in March 2005 on her 21st birthday.
Yesterday, her parents Roger and Molly, spoke to the EDP about the devastating effect of the fatal brain condition, caused by the same infectious agent as bovine spongiform encephalopathy (BSE).
The couple described how their talented daughter, who was reading geography at Birmingham University, went from being a healthy young woman to needing round-the-clock care as the disease slowly took hold.
Mr Smith, a retired vicar, said: “She first became ill in August 2004 but it wasn't diagnosed for another seven months. She was able to stay at university until March 2005.
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“It took so long to get diagnosed because the symptoms are so vague. It could have been various other things in the early stages. There's no blood test and no 100% certain test until after death.
“Initially the symptoms can be confused with depression. Elizabeth wasn't depressed but she had numbness in her face and we thought it was MS.
“Then she started having short-term memory loss but because her brain was young she was able to compensate, which is why she was able to carry on at university.
“However, by the time she came home she found that she had trouble swallowing and then couldn't swallow at all so for the last two-and-a-half years she was fitted with a gastro-tube.
“After that the disease was remorseless in the way that it killed her off. By August 2005 she was a very, very sick person. She was unable to walk for the last two years of her life and couldn't speak or smile.
“She had to be cared for 24 hours a day, seven days a week. She was more helpless for those last two years than when she was born - at least then she could move her arms and cry but by the end she couldn't even do that.”
Despite the seriousness of her condition, Elizabeth only had two short stays at the Norfolk and Norwich University Hospital and for the rest of the time she was cared for at the family home.
She was even able to continue studying for her degree, which she started in 2002 after gaining A-Levels in biology, English, geography and chemistry at Leiston High School.
The former Fressingfield Primary School, Middleton Primary School and Leiston Middle School pupil was first diagnosed with nvCJD on her 21st birthday.
“That was the worst time because we all had to cope with the fact that she was going to die,” Mrs Smith said.
“Elizabeth was clever, bright and intelligent. If she had been able to do her final exams she would have got a very good degree.
“She wanted to do primary school teaching and had a place on a post-graduate training course at Birmingham - she actually passed that interview when she was three or four months into the disease.
“She had a very active life and loved being outdoors. She was good at sports and enjoyed running, while she also liked to visit Minsmere bird reserve.”
Elizabeth, who had a Grade 6 with merit for the flute and a Baden Powell Trefoil Award for Guiding, is the 162nd person to die from nvCJD in the last 15 years.
Mr Smith, who was vicar of Mendham and Metfield from 1978 until 1991, said: “We don't want to scare people because it is an extremely rare disease. Not everyone is going to die from it. In fact I would tell people to worry more about their driving than getting CJD.”
Mr and Mrs Smith were also full of praise for the work of the NHS and particularly the support and care provided by staff at the Harleston Medical Centre, the district nurses and physiotherapists of South Norfolk PCT, doctors and nurses at Norfolk and Norwich University Hospital and Goldsborough Home Care and Allied Healthcare.
Elizabeth's funeral is taking place at the Parish Church of St John the Baptist, Metfield, on Friday and the family have asked for donations to Christian Aid and the Children's Society.
She leaves her parents Roger and Molly, her brother Andrew, 39, and nephews Elliot, five, and Ralph, three.
§Creutzfeldt-Jakob disease (CJD) is a rapidly progressing condition of the nervous system, which destroys brain tissue.
§All forms of CJD are rare and fatal and there is no single diagnosis test or proven treatment or cure.
§New variant CJD (nvCJD) was first identified in 1996 and affects mostly younger adults (average age 27).
§There is clear evidence that variant CJD is caused by the same strain of infection that causes what is known as mad cow disease (bovine spongiform encephalopathy or BSE).
§All forms of CJD can incubate in a person for long periods (often more than 20 years) during which there are no symptoms but the process of disease is present.
§Symptoms include depression, mood swings, memory lapses, fatigue, irritability, sleep problems, loss of balance, paralysis, loss of sensation, speech disorder, disorientation, clumsiness, tremor and twitching.