WSF Update 13^th May 2020

As the UK Government move towards relaxing the current lockdown regulations, the WSF would like to urge our members to continue to social distance and continue to ensure frequent and proper handwashing by all members of the family. With regards to shielding those with WS, if they have received a shielding letter advising that they isolate for 12 weeks – they should continue to do so unless advised otherwise by the Government. For those people with WS who do not have significant health conditions and have not been advised to shield – the advice is the same as that for the general public. Every person with WS is different, with different medical and behavioural issues, making one-fit-all advice impossible. However, at some point, the negative impacts of prolonged social isolation may outweigh the risk of a serious Covid-19 infection. Please discuss with your GP / Paediatrician if you need further advice.

The Coronavirus (COVID-19) and Williams Syndrome

The Corona Virus (COVID-19) has dominated the news and, like you, we are worried. Many of you have asked if your children are at higher risk for getting the virus and/or for complications from the virus. Our sons and daughters of all ages are not at any higher risk of infection than others without WS. However, despite no current reports of children having serious outcomes from the virus, children and adults with significant cardiac problems or hypertension are likely to have a greater risk of complications should they get sick.

As a charity we put the health and well-being of our members first and foremost. Therefore, we are postponing all WSF events until September to allow for social distancing. This decision was taken with a heavy heart as we were looking forward to a year of celebrations with all of our members for our 40th birthday. We are advising all of our members to stay abreast of the advice of Public Health England, Health Protection Scotland, Public Health Wales or Health and Social Care Health Agency for Northern Ireland – depending where you live.

If you are in an area of the country where concerns are high, please pay very close attention to the general guidelines below and additionally follow the directions you are receiving from local authorities, especially those concerning large group events and crowded areas. Our advisors are counselling us that, for most of us, now is the time for precaution, not for major changes in our daily lives.

• Ensure frequent proper handwashing by EVERY member of the family – especially in public toilets and other common public surfaces.

• Keep your hands away from your face as much as possible.

• Sneeze into a disposable tissue (or into your arm/elbow/sleeve) – dispose of your tissue in a bin and wash your hands.

• Use elbows/arms and the backs of your hands as much as possible when touching public surfaces (such as when calling a lift or opening doors – corona virus germs can stay on door handles, handrails etc for as long as 3 days!)

• Washing hands with soap AND water for 20-30 seconds reduces contamination of the hands significantly – this is about the same time as singing “Happy Birthday” twice for those who find counting difficult! Longer washing = fewer germs!

• Manage high temperatures / fever with paracetamol.

We all know how much our children enjoy hugging, high fives and other forms of touching to show affection. Now might be a great time to work on alternatives…fist bumps spread about 50% fewer germs than high fives, and elbow bumps may be an even better alternative for the foreseeable future!