Janet Gibbs' daughter, Joanna, was 13 when she started displaying symptoms of variant CJD, the human form of BSE. "Her behaviour started to become affected in November 2000," says Gibbs. "At first, we blamed adolescence, but then she became very aggressive and unable to control her moods. She would throw knives at people and wave bottles at them."

Despite the severity of her daughter's behaviour, Gibbs found there was nowhere to turn. "The GP was extremely unhelpful and we were told that getting a mental health expert through the education service would take 16 weeks," she says.

It wasn't until the following February that Joanna was finally given an appointment with a paediatrician. By this time, her behavioural problems had lessened but she couldn't walk steadily, her speech was slurred and she didn't want to go to school because she couldn't write properly. "The consultant was clearly concerned and did all she could, but it wasn't until May - five months after the first symptoms - that we were told she had vCJD as a result of eating contaminated beef," says Gibbs.

The news last week that vCJD could have been spread through a blood transfusion for the second time was a stark reminder that many more people may have to go through what Gibbs did. "Because there was a peak of cases that has since declined, a lot of people seem to think the disease isn't really around anymore," she says. "But there are still new cases coming along. What is more, the two cases in which the disease seems to have spread person-to-person for the first time suggest a lot more people could be affected in the future."

When she was first given her daughter's diagnosis, "It came as a complete shock. I had never seen my husband cry before. With this disease, nothing prepares you for the deterioration and the fact that you know your daughter is going to die."

By the following summer, Joanna was in a wheelchair more or less permanently and by the winter, she had to be lifted from bed to chair. She died on New Year's day, 2003.

With vCJD back in the news - even if fleetingly - Gibbs is keen that stories like hers are not forgotten by the general public or by the medical establishment. "The assumption that vCJD is going away is shared by many doctors. This is having a big effect on those who do get the disease because most doctors don't consider vCJD even when they see the symptoms - and this leads to an unnecessary delay in diagnosis."

That isn't helped by the fact that vCJD is an illness in which the symptoms, taken separately, could belong to all sorts of other diseases - behavioural difficulties, short-term memory loss and the slowing down of motor skills, for example. "Nor is it helped by the fact that there seems to be a residual feeling among some doctors - particularly neurologists - that since there is no cure and since it is so rare, they should rule out everything else first," says Gibbs.

"But if you leave it to the last, families miss out on the care and support - not to mention the experimental treatments available - that are so crucial for those affected by this dreadful disease. I know one family whose son was diagnosed just six days before he died. They had lived with it for over a year and it was awful because they got no support."

Frances Hall, a founder of the Human BSE Foundation, lost her 20-year-old son to vCJD in 1996, also as a result of infected beef. She shares Gibbs' concerns about being forgotten. "People think the disease has gone away. They don't realise how many lives are still affected," she says. "Our members, who currently number well over 100, are people who have watched their loved ones, who are usually in the prime of life, deteriorate quickly into people who can do nothing at all for themselves."

She would like to see some of the misconceptions surrounding the human form of BSE eradicated through better education. "Madness is something often associated with vCJD. That's very difficult for families to hear because it's not true," she says.

She wishes, too, that people had a greater understanding about the unique nature of the disease. "The fact remains that only families who have been through this realise how bad it is. The effect is like no other illness. Somehow, you can come to terms with losing someone through an accident or a natural disease, but these families feel their child has been murdered, yet nobody is going to be punished or even apologise."

Sharron Wild agrees. Her daughter, Emma, died in 2002 at the age of 21. "I feel very angry that my daughter lost her life just because she liked beefburgers and I live with that anger every day. I look at the clock some days and expect her to come bounding through the door for some lunch. It's just for a split second, then you remember."

Gill Turner, national coordinator for the CJD Disease Support Network, is also angry. She believes that because vCJD is no longer receiving the attention it should, people at risk from getting the disease are failing to get the support they need. "While there are now good support systems in place for people who have been diagnosed with vCJD, those who are told they are potentially at risk get no statutory support at all," she says.

When someone is diagnosed with vCJD, she explains, their health records are examined to see if there are any public health implications. "The kind of questions asked are, did that person donate blood and if so, who has received it? Have they had any surgical procedures with instruments that could then have infected someone else? After all, the prion protein linked to the disease is very resistant to sterilisation. Addressing these questions is how other people at risk are identified."

The problem is, she says, that the Health Protection Agency breaks the news to people who are at risk simply by telling them never to donate blood or organs and to inform all their health professionals, from dentists to doctors. "But the news is like having to live with a time bomb. That person has to live with the fact that they could get the disease next week or in 40 years, or never at all. In addition, it affects everything from getting a mortgage to life insurance. Surely they should be given support?"

It is little wonder that both the CJD Disease Support Network and the Human BSE Foundation are receiving a small but growing number of calls from the "worried well" - people who are in this situation or, for other reasons, believe that they may be at risk from vCJD. It's a number that could start to increase quite rapidly.

Indeed, while only three infected Britons have died so far this year, compared to 28 in 2000, government-backed research estimates that about 3,800 people may unknowingly have vCJD. Specialists have warned that those people present a continuing risk of passing the disease to others through blood transfusions, organ donation or contaminated surgical instruments.

Hugh Pennington, professor of bacteriology at the University of Aberdeen, adds that the patient featured in last week's news had a different genetic makeup from the one found in all the other 142 patients who have died from vCJD in Britain. "This patient actually died from something completely unrelated to vCJD, but he had received blood from someone who later developed vCJD and traces of the disease are said to have been found in his spleen. Theoretically, this means that there could be another pool of people that we don't know about who are still incubating the disease," he says.

Nevertheless, Pennington stresses that despite the "enormous uncertainty" about the disease, it is not necessarily a death sentence for vast numbers of people. "I don't think there is any need for a public health scare," he says. "There is still a huge possibility that the numbers of cases will continue to fall. We don't know nearly enough about the disease yet to make any clear assumptions about its future. Only as research continues will we get definite answers."