Rare kidney stone disease service celebrates five years


Posted on Friday 7 February 2014
Kidneys

The UK’s only service which helps people living with a rare form of kidney stone disease is celebrating its fifth anniversary.

Cystinuria is an inherited disease that can completely disrupt people’s lives. It mostly affects young people in their 20s and 30s who will experience recurrent painful episodes of kidney stones. Around 12,000 people in the UK have the condition.

Miss Kay Thomas, consultant urological surgeon who helped set up the cystinuria service in 2008, says: “Cystinuria cannot be cured but it is possible to reduce the chance of getting stones. We educate patients to look after themselves and give them advice on how to prevent stones through diet. We produced our own cookbook to help patients eat and drink the right things. 

“The condition can lead to kidney failure. We provide minimally invasive surgery to help remove some of the stones.”

The service is run by a team of surgeons, dietitians, nurses, and researchers who are looking into new treatments. Because it is the only one of its kind in the country, the experts see patients from all over the country.

On 1 February hundreds of patients gathered at an open day at Guy’s Hospital to meet the team and talk to other people who suffer from the same condition. 

For more information, visit the cystinuria website

  • cystinuria literally means 'cystine in the urine'
  • cystine is an amino acid, which is a ‘building block’ of protein in the body
  • people who suffer from cystinuria have a problem with transporting cystine in the kidneys
  • this leads to a build up of cystine in the urine, which if the levels are high enough can form crystals – these then grow and become stones.

Find out more about the urology service at Guy's and St Thomas'.

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