COVID-19 update for cystinuria patients.

We appreciate the current situation is causing significant anxiety for patients with cystinuria and whether they are at increased risk from the illness. Whilst cystinuria is a chronic kidney disease, the potential effects of COVID-19 are unknown. Risk to individuals will be affected by many other factors such as other co-morbidities (illnesses) such as diabetes, lung or heart disease. It is simply not possible to give specific advice to individuals on this risk as we don’t know. Some advice on kidney disease and COVID is available on the Guy’s and St. Thomas’ kidney website and on the NHS website.

Whats New ?

The Cystinuria Patient Day that was planned for Saturday 19th September has been cancelled because it is not possible to sensibly organise a large group meeting and maintain social distancing. We will be in touch soon about future plans.

We have set-up a forum for cystinuria patients on the HealthUnlocked platform. Please have a look and consider registering and contributing. The website can be accessed here: https://healthunlocked.com/cystinuria-support 

We have created a video outlining the diagnosis and management of cystinuria. This video can be viewed here. (note: this was created as an educational video by an external company and is viewed on their website. We did not receive money for this video and do not endorse their products)

Our recent publications:

Hypertension and renal impairment in patients with cystinuria: findings from a specialist cystinuria centre. - Urolithiasis 2019

Stones: Predicting stone episodes using cystine capacity - Nature Reviews Urology 2016 - refers to this article in the Journal of Urology from Professor Pearle

Associating mutations causing cystinuria with disease severity with the aim of providing precision medicine. - BMC Genomics 2017

Can presence of crystals in the urine predict stone formation. - Journal of Endourology 2016

The role of protein modelling in cystinuria. - European Urology 2016

Follow us on Twitter @cystinuriaUK

This website was written and designed by a group of interested health care professionals and patients, all of whom felt that the current information on the web about cystinuria was limited, confusing and not particularly orientated to British patients. It has been designed to provide clear and concise information for cystinuric patients and/ or their friends and family. Our aim is threefold:
  1. To help patients develop a better understanding of cystinuria.
  2. To offer specific information about the investigation and treatment of cystinuric stones.
  3. To improve the non-surgical management of stones, and in particular to improve efforts to prevent stones through changed diet.
    Patients often have common themes to their presentation but because the disease is rare, may not meet other affected individuals, and so are unable to share their stories.

    If you feel that anything is incorrect or if there is anything you would like to see on the this website then please contact us and let us know what you think via the
    Contact/ Feedback form.

    The website has been written and designed by healthcare professionals from
    Guy's and St. Thomas' NHS Foundation Trust with significant contributions from several patients who wish to remain anonymous.

    The Team at CystinuriaUK
    • Miss Kay Thomas, Consultant Urological Surgeon
    "I have a specialist interest in cystinuria and in particular the preventative measures which may be useful in helping patients have some control over the impact of their disease. I established a multi-disciplinary specialist clinic for cystinuria which has led to the development of this website."
    • Mr Matthew Bultitude, Consultant Urological Surgeon

    Disclaimer: All the information contained on this website is for education and information only. This does not replace advice from an appropriately qualified doctor. If you are unwell or require medical advice, help or treatment you should consult your doctor or urologist. Whilst we have taken every care to ensure that the information contained in this website is accurate, complete and up-to-date, we cannot guarantee this. Links from this site to other websites are provided for information and convenience only. We cannot accept responsibility for their availability or the information they contain. We do not endorse any particular sites.
    All material on this site is subject to Copyright ©. You may not reproduce any content from this website without obtaining permission from the authors.
    Last Updated: December 2020