The Coronavirus pandemic is a worrying time for everyone.
It is likely that most (but not necessarily all) adult patients with nephropathic cystinosis will be in the “highly vulnerable” group. Advice about isolation and shielding changes frequently; and so the government website should be consulted: https://www.gov.uk/coronavirus.
Adults may encounter more complications than children. If they get painful and persistently red eyes, they may need to contact their local eye department to see if they need an urgent review. Otherwise continuation of existing ocular medication is required.
As for children, Cystinosis is not a condition that predisposes to more severe disease. However, as with any infection, if they do become ill, especially if they are unable to tolerate fluids, there is, of course, an increased risk for dehydration and worsening electrolyte abnormalities. For which they may need to be seen and may benefit from IV fluids. This is not specific for COVID-19; but true for any infection.
We recommend the following website which is updated frequently with advice from specialist societies: https://www.kidneycareuk.org/news-and-campaigns/coronavirus-advice/
Your local nephrology team will advise you about supply of medications including Cystagon and eye drops, which you should continue to take as usual. Home delivery services may have to be activated for those not already using this system.
Cystinosis is also referred to as Nephropathic Cystinosis. This emphasises its effects on the kidneys and distinguishes it from another form of Cystinosis that only affects the eyes. Note that Cystinosis must not be confused with Cystinuria which is an entirely different condition.