An understandable concern for people with PWS, their families and other carers at this time is, first, whether having PWS makes you more susceptible to catching COVID-19 and, secondly, whether people with PWS are more likely to be seriously affected if they are infected with the virus.

The IPWSO Clinical and Scientific Advisory Board (CSAB), chaired by Dr Dan Driscoll, are monitoring this on IPWSO’s behalf. At present there is limited evidence to allow us to fully answer these questions. At the recent meeting of the CSAB few clinicians had heard of anyone with PWS having been affected.

The PWSA USA has very recently posted details of a 19 year old man, named Tony, with PWS who was in the intensive care in St Louis following COVID-19 infection and is now doing well – his mother reported that he has had his first meal in 13 days and is looking forward to the next one!

There is at present no reason to believe that just having PWS makes you more susceptible to COVID-19. However, what may make people with PWS more at risk for catching COVID-19 is if they find it more difficult to keep to the social distancing rules or do not follow hand washing guidance. At this stage in the global pandemic we would urge people with PWS, families and other carers to all do their very best to adhere to these rules and to the recommendations published by the World Health Organisation.

What is very clear is that there are things we all can do and should do that decrease the likelihood of the spread of the virus from one person who is a carrier of the virus to others who are not.

The second question is whether people with PWS once infected are more at risk for a more serious illness. The answer to this is that it probably largely depends on the presence or not of other problems, some of which are more likely to be present in people with PWS, for example, obesity and a history of respiratory disease. It also appears to be the case in the population as a whole that men are more at risk than women.

There is another issue that many of you will be familiar with – it may be more difficult to identify the onset of an illness, such as COVID-19, in people with PWS, because they may not develop a temperature or complain of any specific symptoms. However, an unexplained change in behaviour or general non-specific complaints might be early signs – we don’t really know. What is clear is that if the person with PWS appears to have difficulty breathing that is serious and urgent medical advice should be obtained.

Together with others we are working on developing a survey about COVID-19 so that we can all be better informed about how this infection presents in people with PWS and its course over time. We will keep you updated.