With the developing corona-virus pandemic, patients with FCS may be wondering about their well-being. In line with everybody else, FCS patients should follow government guidance which is being continually updated as the situation develops, and can be found here.

Patients who also have diabetes must pay attention to the diabetes-specific advice.  This page from Diabetes UK is helpful


In order to minimise symptom, patients will need to be even more careful about their food choices to minimise the symptoms of FCS. However, the usual advice around seeking urgent attention in the event of symptoms suggestive of pancreatitis remain, even if local services are stretched.

Living with any rare disease can feel isolating and we know that many FCS patients can experience episodes of depression related to their disease. With social distancing and further restrictions on social contact very probable, it is very important that patients find ways of managing their mental well-being. Keeping in touch with others, by telephone or on one of the many video apps, is very important. Exercising can also improve mood and there are many online apps to take you through exercise routines at home.

For patients currently using volanesorsen, arrangements about attending hospitals or GP surgeries for blood tests for platelet monitoring may need to change. Your local services will update you.

Stay safe and keep in touch.

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