February 21, 2002 Daily Mail (London) by Sinead McintyreWHEN Kirsty Garven died of the human form of mad cow disease her heartbroken parents thought things could not get any worse.
But now they say they are being 'stigmatised' because their dentist has refused to treat them.
The couple and their other daughter Rachel, 19, have been referred to the Liverpool Dental Hospital, 20 miles from their Chester home, where instruments used on them can be vigorously sterilised. Families of new variant Creutzfeldt Jacob Disease sufferers cannot catch it from them.
But confusion has arisen because Health Department guidelines on the treatment of victims' families do not differentiate between new variant CJD, which Kirsty died of, and the extremely rare familial strain, which is inherited and not caused by infected meat.
Unclear advice has caused panic among dentists and 12 UK families have found themselves facing the same problem as the Garvens.
Yesterday they said their treatment only added to the anguish they suffered watching 20-year-old Kirsty deteriorate and eventually die in a hospice two years ago.
Jennifer Garven, 54, said she was especially concerned for Rachel. 'Is she going to be stigmatised for life?' she asked.
Her husband Alexander, 60, said: 'They are telling us it's all about the sterilisation of instruments.' Gil Turner of the the CJD Support Network said: 'It's a problem with the interpretation of the guidelines and we are working with the Department of Health to try and clear it up.
'It's very sad to lose somebody but to have discrimination afterwards for any procedure is devastating.' Andrew Smith, a clinical biologist at Glasgow University, who advises the CJD Support Group and the Health Department, said: 'Current advice insists on hospital dental treatment for confirmed cases, suspected cases and those deemed "at risk". These wrongly include families of people with familial CJD, he said. 'New variant CJD is not transmissible across families.' A Health Department spokesman said: 'The guidance does not currently differentiate between types of CJD in this context.
'The guidance is vague and is currently under review. Families with a case of new variant CJD do not pose a risk.'