Hopes for vCJD sufferer Holly

2:18pm Monday 3rd December 2007

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THIS picture of Holly Mills sends out an extraordinary message of hope for other victims of the devastating illness vCJD.

When the North Yorkshire woman was diagnosed as suffering from the condition more than four years ago, her parents were warned she had only weeks to live.

"We were told to begin preparing for her funeral," said her mother, Linda, of Thornton-le-Dale, near Pickering.

But in October 2003, as Holly's health was worsening by the day, she became one of the first people in the world to be given a revolutionary new treatment, involving a drug called Pentosan Polysulphate being pumped directly into her brain.

The couple told today how, over the past four years, her condition had not only stabilised but there had also been slight but significant improvements.

They said her weight, which plummeted at one point to only 5st, had gone back to 9st.

Linda said her daughter could also make noises to communicate with them and used an exercise bike daily, albeit strapped safely into position.

Linda said as Holly, now aged 22, continues to survive, they continue to hope that some day, new treatments will emerge to bring about further improvements or even a recovery.

She said: "We have to remain hopeful. We have to believe she may one day recover. She has done fantastically."

But the couple remain frustrated by a lack of research into why and how the drug helps their daughter, following a neurologist's study in 2005.

Linda said Holly, a former pupil of Pock-lington School, had been a fit and healthy teenager before falling ill aged 18.

The couple have no idea how she caught vCJD, but they suspect it may have been through eating contaminated beef products more than two decades ago.

What is Pentosan Polysulphate, how is it administered - and how can it help vCJD victims like Holly Mills? Mike Laycock reports

Neurological expert Ian Bone conducted a study of several patients receiving Pentosan Polysulphate (PPS) treatment on behalf of the Medical Research Council (MRC) a couple of years ago.

An MRC report said afterwards there was no proven treatment for Creutzfeldt-Jakob disease and other human prion diseases, but there were a number of potential treatments being considered or under assessment, including PPS.

The report said: "To date, no treatment has been shown conclusively to slow or halt the disease in humans with any form of CJD."

The report said PPS was a molecule derived from beech wood which had many properties such as blood thinning and suppressing inflammation.

It said: "Taken by mouth, it has been used in clinical practice for some while and is licensed to treat bladder inflammation. The rationale for using PPS in humans with Creutzfeldt-Jakob disease and other human prion disorders rests essentially on experimental laboratory research.

"The chemical nature of PPS means that it is unable to enter the brain when administered orally (by mouth, in tablet form) or intravenously (injection into the bloodstream).

"The drug requires a complex delivery system. A pump is placed under the skin, either in the tummy or under the arm, and a tube from this leads up under the skin to the scalp. A small hole is then made in the skull and the end is put deep in the brain."

Prof Bone said in his report that some of the patients treated with PPS appear to have survived for long periods. "However, it cannot be concluded that the treatment has had a beneficial effect, because it was impossible to make direct comparison with similar but untreated patients."