Sunday 18 November 2018

Hope as new treatment halts CJD in teenage boy

PATIENTS suffering from the early stages of variant Creuzeldt-Jakob Disease (vCJD) must be given access to a revolutionary new treatment that appears to have halted the disease in a Belfast teenager, it was claimed last night.

Dr Stephen Dealler, a microbiologist at Lancaster University, who helped pioneer the use of pentosan polysulphate on 19-year-old Jonathan Simms, said a number of other vCJD sufferers have been offered the radical treatment.

"Several patients early on in the disease are now being offered the drug. Its long-term results must be investigated," said Dr Dealler.

Medical experts were in Belfast yesterday to examine the case of Mr Simms, who had been given months to live before he began having the drug injected into his brain in January.

His family fought an eight-month court battle with health chiefs to allow him to be treated with PPS, but it is not known whether the families of other victims of vCJD, the human form of BSE, will face a similar fight.

Don Simms, who organised yesterday's conference, said he hoped the medical establishment would sit up and take notice.

"Those who are in positions that matter, I hope they are listening today," he said, adding he believed families of other vCJD sufferers who requested the treatment should now be taken seriously.

Scientists and neurologists from as far away as Japan travelled to the North for the special case conference. They were informed there had been no further deterioration in Jonathan's condition since he began taking the drug in January.

His GP, Mark McClean, said his ability to swallow had returned, his body weight had returned to normal and he was no longer showing signs of anxiety.

"The professional hopes are that this isn't just being done for Jonathan. This is being done for all present and future victims of this disease," Dr McClean said.

But he later spoke of the frustration felt that the drug was not administered in March 2002, when Mr Simms's family had first requested it. "It is extremely unfortunate that we waited for eight months before the treatment was given. During that time, he deteriorated markedly."

Mr Simms said he believed his son's condition would not have deteriorated had he been given the treatment in March 2002.

"When we wanted to apply the drug, Jonathan could walk and talk and feed himself," he said. "But we will never know fully until other patients are given this compound." Dr Chris Pomfrett, a lecturer in neurophysiology from Manchester University, has been monitoring Mr Simms's treatment using a new technique of measuring variations in heart rate. He said tests on Jonathan before and after treatment have shown distinct changes.

Dr Pomfrett said he believed use of the drug should be opened up to other vCJD victims but he warned that the drug was no miracle cure.

"All we have been able to do is stabilise Jonathan's condition. I don't think anyone in this conference would expect Jonathan to make a full recovery."

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