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 and guidance from their healthcare provider, which is being continually updated as the situation develops. Government guidance can be found here
Patients who also have diabetes should pay attention to the diabetes-specific advice. This page from Diabetes UK is helpful
Patients are advised to take extra care 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. Social distancing and further restrictions on social contact mean that 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 on the Early Access to Medicine Scheme, arrangements about attending hospitals or GP surgeries for blood tests for platelet monitoring may need to change. Your local services will update you.
Akcea Therapeutics issued the following statement:
‘We currently have enough volanesorsen in stock at our UK distributors to support the current EAMS patients throughout this year. We’re aware that the current EAMS process of patients having to attend hospital/GP for blood collection for platelet monitoring on a fortnightly basis, may become compromised by the COVID-19 situation and we are actively exploring alternative mechanisms to maintain patient safety and access to the medicine should this become an issue.
In terms of the situation in relation to patients currently being treated with volanesorsen within the EAMS, we are keeping a very close eye on the evolving situation regarding the COVID-19 Coronavirus, and ensuring that EAMS patients will continue to have access to volanesorsen is of paramount importance to Akcea.’
Please stay safe and keep in touch. You can join our online community for people affected by FCS the LPLD Discussion Community through our Facebook page