Page last updated at 00:08 GMT, Saturday, 11 July 2009 01:08 UK

'I was frightened to get help'

By Jane Elliott
Health reporter, BBC News

Aric  Ebbs
Aric has a family history of kidney disease

Aric Ebbs was becoming weaker and weaker, and even climbing the stairs was a struggle.

He had to give up his work as a landscape gardener.

Two of his brothers had already been diagnosed with kidney problems and had needed dialysis.

Aric, 24, from London, feared the worst. He was reluctant to get himself screened as an earlier urine test had cleared him of kidney disease but his mother insisted.

Hereditary disease

"My brother died aged 20 from kidney disease and my older brother needed treatment for the disease, but I still didn't think I could be suffering from the same thing, although I knew something was wrong.

"I was really devastated. At first I thought going to the doctor was the worst thing that could happen.

My mum literally dragged me in for screening and I'm so lucky
Aric Ebbs

"But no matter how hard it is, it is better to see it through."

Aric started to experience his symptoms in July. By September, when he went for testing his haemoglobin levels were so dangerously low that he needed immediate dialysis.

"After the blood test, the doctor told me my haemoglobin blood count was very low - 4.9 when it should be about 12," he said.

He was told he had a rare genetic kidney condition called Alport Syndrome.

Higher risk

Motipashe Chinodya, renal research sister at the Royal London Hospital, where Aric was treated, said his shortness of breath was due to an accumulation of fluid, and his sickness was a build-up of toxins.

"Aric was extremely lucky," she said.

Alport Syndrome

Alport syndrome is a genetic disorder, characterised by kidney damage, hearing loss and eye problems

Men are more severely affected than women. It affects about one in 5,000, people

It was first identified in a British family by Dr Cecil A Alport in 1927

"Because his mother had seen the symptoms that his older brother, who had sadly passed away, went through she understood the problems put all the others at risk and was able to insist he get tested."

But she said many others were still going undiagnosed because they were ignoring or misunderstanding important symptoms.

"It takes for a lot of symptoms to come up before people will go and get themselves checked out. They might have other symptoms and then find they have a kidney problem," she said.

But Ms Chinodya said there were certain groups who should always check their kidneys because they were at a higher risk.

Dialysis: Pic caption: Y.Beaulieu, Publiphoto Diffusion/SPL
Aric needs dialysis three times a week

"If you are in the black African, Caribbean or South Asian group you are at a higher risk of developing chronic kidney disease," she said.

"People with high blood pressure should always be on the look out because of the restriction of the arteries damaging their kidneys; those with diabetes should also check as this can put strain on the kidneys."

She said symptoms could include more frequent urination or wanting to urinate, dark urine or bloody urine.

Detecting symptoms

Ten per cent of adults in the UK have some form of kidney damage yet fewer than 4% have been identified.

The Royal London is a pilot site for Kidney Research UK's screening and, since free sessions there began last September, about 750 people have volunteered, with almost 50 of those requiring a follow-up and in serious need of treatment.

"If the disease is detected early enough things can be done," said Ms Chinodya.

"Medical teams here are close-knit and work in collaboration and can do things to slow down the pace of the disease and need for any future dialysis.

Of the 750 seen so far at The Royal London, 20% of those patients had poorly controlled blood pressure and were advised to seek intervention.

Some patients who knew they had diabetes did not have good control of their blood sugars and were unaware this could lead to renal problems.

Ms Chinodya said it was important people were seen by the right department if they suspect renal problems.

"Aric could have ended up in A&E and could even have died. His case highlights how important it is to be safe rather than sorry.

Aric, who has just been placed on the transplant list, now has dialysis three times a week.

But he knows it could so easily have been a different story.

"My mum literally dragged me in for screening and I'm so lucky."

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