COVID-19 and Cystinuria

[MattBultitude]

We have had a number of calls, emails and posts on here regarding the effects of COVID-19 on patients with cystinuria. We appreciate the current situation is causing significant anxiety for patients. In the UK the Government [link below] have suggested people with "chronic kidney disease" are at "increased risk" without defining what that means (and covers a whole range of patients from people having no day to day problems, to people on dialysis). Whilst cystinuria is a long-term 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 in general and COVID is available on the Guy’s and St. Thomas’ kidney website and on the NHS website below.

Link to UK Government advice: gov.uk/government/publicati...

NHS Advice on chronic kidney disease: nhs.uk/conditions/kidney-di...

Guy's and St. Thomas' Hospital advice for kidney patients: guysandstthomas.nhs.uk/our-...

[cristhin82]

I am not a doctor, but I think that since stones often cause infections then we are at a higher risk. If the body is already fighting a UTI, it would be already debilitated when it comes to fight something so aggressive as Covid-19. Please correct me if I am wrong.

[F1Guy]

Hi Matt, would you say that we should be self isolating, from the information that I can find it would suggest that we should,

[Catty8]

Thank you Mathew , I was concerned about my brother as he had a kidney transplant so I assumed he would be in the at risk category ? As you know I have bad lungs so am in isolation! Day 8 today 😳

[AwesomeAT]

Our local doctor rang yesterday(as I have messaged)to say my son who has Cystinuria is not classed as in the vulnerable list, but I’m still isolating him!