Hope for patients like Fiona as drug trialled in Sheffield is cleared for NHS use

Fiona Charlesworth has polycystic kidney disease - an inherited, and life-threatening condition. She underwent a transplant two years ago and her son has the illness. Fiona is backing a new drug called Jinarc, trialled in Sheffield
Fiona Charlesworth has polycystic kidney disease - an inherited, and life-threatening condition. She underwent a transplant two years ago and her son has the illness. Fiona is backing a new drug called Jinarc, trialled in Sheffield
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When Fiona Charlesworth underwent a kidney transplant two years ago, her health was at its lowest ebb.

The 55-year-old, who was diagnosed as a teenager with a potentially lethal inherited kidney disease, needed dialysis three times a week at the Northern General Hospital after a sudden medical emergency meant her left organ had to be removed.

Following her surgery, the Sheffield College manager noticed a huge improvement - but now a new drug approved for use on the NHS means more patients might be spared a similar ordeal.

The medication, called tolvaptan, was trialled in Sheffield and is prescribed for people with ADPKD - autosomal dominant polycystic kidney disease - the most common, but still life-threatening, form of genetic kidney disease.

ADPKD causes small, fluid-filled cysts to develop in the kidneys, which eventually grow large enough to affect the organs’ function.

There are currently around 60,000 people in the UK with the illness. Currently around half of patients will need a transplant or dialysis by the age of 54.

However, the new drug, given the green light by the NHS rationing body NICE, works by delaying the progress of the condition, staving off kidney failure and allowing patients to stay healthy for longer.

Fiona, who works at Peaks College in Waterthorpe and lives in Renishaw, Derbyshire, is one of six children, four of whom inherited the ADPKD gene from their father.

Her oldest sister Justina died aged 60 three years ago and Fiona’s son Robert, 30, was diagnosed aged four.

Another sister, Tess Harris, is head of the PKD Charity, which supports research and raises awareness.

Fiona had symptoms including infections, pain and high blood pressure for many years before her eventual diagnosis.

“It was frustrating to keep going back to the doctor,” said Fiona, married to former miner Stephen, 67. “My transplant has worked for me - I don’t need any more dialysis. I feel a lot better, and though I still have problems they’re a small price to pay for being able to lead a fairly normal life.”

The illness can cause problems in pregnancy. Robert was born prematurely and Fiona’s first son Michael was delivered stillborn in 1984.

Symptoms can start at any time, she added. “The drug can help people like me and hopefully my family as well.”