Coronavirus Updates

Updated 21st April 2020 –

It is an uncertain and worrying time for everyone, and as we understand, more so for those within our ED family.

Many of you are concerned with what you should or should not be doing, along with knowing whether you fall within the vulnerable category and should be shielding.

We have put together some FAQs which we hope will help to answer this for you.

Please download the Covid-19 Guide for our ED Families.

Why do we need to wash our hands for 20 seconds – 3rd April 2020

In these uncertain and isolated times, we very much need some positive news too. We want to share with you all how two German ED group members have recently recovered from Covid-19. They both overcame the virus without any consequences and I think their stories are comforting and hopeful for our ED community.

Overcoming Coronavirus with Ectodermal Dysplasia – 1st April 2020

Ectodermal Dysplasia and Covid 19 – Letter from ED Society UK CEO 25th March 2020

March 2020

The coronavirus (COVID-19) has been dominating the news the past few weeks as more cases are being reported around the world.  COVID-19 is a new illness that can affect your lungs and airways.

We would like to share with you some advice given by the UK’s NHS and National Eczema Society (NES).

Symptoms of coronavirus:

  • a persistent dry cough
  • a high temperature
  • shortness of breath

But these symptoms do not necessarily mean you have the illness.  The symptoms are similar to other illnesses that are much more common, such as cold and flu.

How to avoid catching or spreading coronavirus:

  • wash your hands with soap and water often – do this for at least 20 seconds
  • always wash your hands when you get home or into work
  • use hand sanitiser gel if soap and water are not available
  • cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze
  • put used tissues in the bin straight away and wash your hands afterwards
  • try to avoid close contact with people who are unwell
  • do not touch your eyes, nose or mouth if your hands are not clean

Coronavirus and ED:

We have received a number of enquiries about the advice on frequent handwashing and use of hand sanitisers to reduce coronavirus risk.

Handwashing is the best way to reduce transmission of coronavirus and washing your hands with water and your usual emollient soap substitute should be adequate. Emollient helps remove the virus from your hands during the washing process and serves the same cleansing purpose as soap.

Washing your hands during Coronavirus

We recommend that you continue to use emollient to wash your hands (decant a small amount into a pump dispenser or pot and refresh daily) and re-apply your emollient afterwards. If you feel you need to use sanitising gel (which may irritate your eczema), apply your usual emollient afterwards to minimise any irritant effect. There is no eczema-friendly hand sanitiser, as they all contain alcohol, which dries out the skin.

In public places where you can’t avoid touching surfaces, try not to touch your nose, eyes or mouth (or your child’s) because the virus gets in through mucous membranes.

There is a possibility of increased risk of chest infection/pneumonia from Covid-19, specifically for people with HED.  The flow of mucous is different for those with ED. Respiratory tract infections are a common symptom in general, so it would be sensible for people with HED who have had serious chest infections at any stage (either as young children or as adults) to take COVID-19 seriously and act on the general advice about minimising risk of infection.   We advise you use a humidifier at night along with a fan to help keep you cool (and air con if you have it).

The other difficulty with COVID-19 and ED will be temperature issues, due to one of the symptoms being a high temperature.  Please remember to continue to act on all cooling methods and products you currently use.

Do I need to avoid public places?

Stay at home

  • Only go outside for food, health reasons or work (where this absolutely cannot be done from home)
  • Stay 2 metres (6ft) away from other people
  • Wash your hands as soon as you get home

Don’t hesitate to call your Doctor to get the most up to date advice.  Calling the emergency services will only give information relating to everyone and not specifically those with ED and who cannot sweat.

For current and up to date information, please continue to check the relevant medical and government websites in your country.