Updated 13th August 2020 –
Diana Perry, along with other professionals, has helped create an article to explain the issues linked between Covid-19 and Ectodermal Dysplsasia, and the problems that can arise from contracting the virus.
We would like to encourage our ED community to use the article below to pass on to their GP/medical professionals. It will help explain the condition to them, how some may be susceptible to infection due to immune deficiency, and to help prove these issues and take it more seriously when seeking their advice.
Face coverings are now mandatory in all shops and on public transport in the UK, those affected by Ectodermal Dysplasia will struggle due breathing, overheating and other issues.
The ED Society UK have now created their own face covering exemption card indicating you have ED and are exempt from wearing face-coverings. Find out more here
ED Society UK artwork for the #DistanceAware initiative is now available to download for free, to enable you to create your own social distancing badges and lanyards. Find out more about our involvement here.
As this is such a worrying time, be vigilant regarding temperature. Those affected by Ectodermal Dysplasia can have a wider range, sometimes as low as 35°C at any age. It is therefore important to know the normal average temperature of an individual affected by ED! We have explained this further – Ectodermal Dysplasia and core temperature
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.
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.
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.
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.
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.