Page last updated at 00:36 GMT, Sunday, 27 April 2008 01:36 UK

'Missed disease put me at risk'

By Jane Elliott
Health reporter, BBC News

Fiona Loud with friend Celia Heney who ran with her for Kidney Research UK
Fiona on a run to raise funds for kidney research

When Fiona Loud gave birth to her daughter in the early 1990s, her kidneys showed signs of damage.

But despite investigation doctors were unable to find a cause.

It was another seven years before a routine screening for another medical problem alerted experts that Fiona's kidneys were in real danger.

A follow-up scan revealed that not only did Fiona have a malignant tumour on one kidney, she had a genetic condition called tuberous sclerosis, which can trigger abnormal growths in organs throughout the body.

KIDNEYS
Located in the back of the abdomen, just below your rib cage on either side of your spine, the kidneys are approximately 12cm long and contain about one million filtration units, known as glomeruli
They are vital organs. Every day the kidneys filter around 175 litres of fluid from the blood then reabsorb what is needed for the body.
From this, they produce approximately 2 litres of urine containing filtered toxins and waste materials

A second tumour was subsequently found on Fiona's other kidney and within five years she suffered kidney failure. Her only option was a transplant.

But despite spending years on the transplant list, a suitable donor could not be found so she had to rely on her husband, Keith. The operation took place last year.

Although an early diagnosis might not have prevented her tumours forming, it could have delayed kidney failure and she is now calling for better screening to avoid others having similar problems.

"I had no idea there was anything wrong with me at all until I gave birth to my daughter who is 16 now," said the 48-year-old IT consultant from St Albans, Hertfordshire.

"It was very late on in the day when they spotted my renal problem and by then I had lost about a third of my kidney function. But there were still no outer symptoms."

Long wait

Experts warn that cases like Fiona are still slipping through the net and that better screening of at risk groups are needed.

Charlie Tomson, a kidney consultant a Southmead Hospital in Bristol, said: "The reason most problems are not sorted until too late is that most early kidney disease problems do not cause pain unlike arthritis and heart disease.

"So it is more reliant on us doing the tests to spot it, such as urine tests or blood tests.

"The tests today are very easy and simple, but without these kidney disease can go undetected until it is quite advanced.

"Certain people should be offered regular tests such as all people with diabetes, people with significant heart disease and high blood pressure as well as some other groups and if we screened them we would pick up most cases of kidney disease.

"More people are being tested so we are improving. But there is still room for improvement."

Fiona agrees: "If you have any family history of problems you should go to the doctor and get tested with a very simple urine or blood test," she said.

"I had a particularly rare disease that was difficult to spot, but other kidney problems are still not being detected.

"Kidney disease is sometimes referred to as the 'silent killer' because it can go unnoticed.

"The low level of awareness is challenging to people who are at an increased risk of disease.

"This is why we really need to ensure that those most at risk are screened early so that doctors can intervene with the right treatment."

Techniques

Experts warn that although testing techniques have moved on since Fiona had her initial problems, there are still a large number of cases, which like hers go undetected.

They say that as many as one in 10 has some form of undiagnosed kidney disease.

Paul Stevens, from Kent and Canterbury Hospital, said: "Whilst kidney disease can be a chronic, long-term condition we have witnessed real advances in the overall management of the disease offering improvement in the standard of care for patients.

"But we need to do more. People at risk of the disease need advice and regular screening.

"All patients with kidney disease need access to the full range of treatment options to manage their conditions to ensure they have the best outcomes and quality of life as possible."

In the UK more than 37,800 adults are currently undergoing dialysis and the number of people receiving dialysis will increase significantly over the next decade.

Kidney disease cannot be cured and the function of the diseased kidney can only be fully replaced by transplantation.

It is estimated that 7,000 kidney patients are awaiting a replacement kidney.

However, there is a significant shortage of donor kidneys available with 400 people dying each year whilst waiting for a kidney transplant.




SEE ALSO
'Despite the wait I enjoy life'
10 Sep 07 |  Health
Everyone 'should donate organs'
17 Jul 07 |  Health
'I'm waiting for a transplant'
31 Aug 06 |  Health

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