Home » Ectodermal Dysplasia Society » Important information and updates about Covid-19 for ED families

Important information and updates about Covid-19 for ED families

Updated 18th May 2021 –

Latest coronavirus guidance in your nation

Each nation in the UK has different guidance on dealing with the Covid-19 pandemic:

Mencap has produced a fantastic easy read guide to the latest coronavirus alert levels.

Guidance on shielding and protecting people who are clinically extremely vulnerable from COVID-19

The government have now updated their Guidance on shielding and protecting people who are clinically extremely vulnerable from COVID-19.

Although the advice to shield has ended, clinically extremely vulnerable people must continue to follow the rules that are in place for everyone.

Guidance on Shielding – May 2021

April – return to school for clinically extremely vulnerable (CEV) children in England

return to school

The Department for Education (DfE) has updated its schools coronavirus operations guidance for England, which confirms that all CEV pupils should now attend school from Thursday 1 April.

The only exception is if your child is one of the very small number of pupils under paediatric or other specialist care who have been advised by their GP or clinician not to attend.

Pupils who live with someone who is CEV should continue to attend school as normal.

We know some of our ED families may be thinking about continuing to shield their child. It’s important to be aware of what the law says. A child may only remain away from school if a statutory reason applies, such as being unwell. Fixed penalty notices for non-attendance still apply as usual.

Preparing your child to return to School

It is without a doubt our ED families will have many questions and concerns now shielding has ended. Please take a moment to read the Society’s Return to School Guidance. This document is for you, the parent, as well as some information for your child to read and understand.

If you face any issues with your child/children when they return to school, please get in touch with the ED Society and we will do all we can to help and get you the support you need.

You can get vaccinated if you are your child’s carer.

Unpaid carers who get Carer’s Allowance, or who are the main carer of an elderly or disabled person whose welfare may be at risk if the carer falls ill, should be prioritised alongside people with underlying health conditions. This means unpaid carers will now be in priority group 6: (see Covid-19 Greenbook).

Our advice to you now would be to ask your GP to mark your medical record with a “carers flag”. ​It’s a good idea to register as a carer with your GP, regardless of access to the coronavirus vaccines, as this will mean they can identify you for health checks and a flu jab and it will help your GP make reasonable adjustments for the person you care for if needed. There shouldn’t be a reason for your GP to refuse this.

Many of our ED members have faced trouble with being recognised as clinically extremely vulnerable, resulting in being pushed further down the wait list to receive a Covid-19 vaccine. We are very pleased to let you all know we have successfully helped some of our ED community with letters, now granting them the Covid vaccine earlier.

If you feel you have been missed and need help getting the vaccine sooner to enable you to return to work etc. or if you’re GP has asked for a letter of support to show clinical vulnerability in order for you to be moved into the correct category, please use the letter below –

Carers/vulnerable letter for approval of Covid-19 Vaccine – March 2021

Please email info@edsociety.co.uk for any further help and information.

covid help

Households and bubbles of pupils, students and staff of schools and colleges: get rapid lateral flow tests

The following people in England will have access to regular rapid lateral flow testing made available to them as schools and colleges reopen:

  • secondary school pupils and college students
  • staff of primary and secondary schools and colleges
  • households, childcare and support bubbles of primary and secondary-age pupils and college students
  • households, childcare and support bubbles of staff of primary and secondary schools and colleges

Primary school pupils will not be asked to test at this time.

Find out about childcare bubbles and support bubbles.

Learn what rapid lateral flow testing is and why it’s being used.

Coronavirus Vaccines

There are two vaccines currently authorised for supply in the UK, The Pfizer/BioNTech vaccine and Vaccine AstraZeneca. A third has been approved, Moderna, which is planned to be rolled out in the spring.

You can access full information on both these vaccines, here – Covid-19 Vaccines and Allergies

Covid vaccination

Do you have questions about the new COVID-19 vaccines and allergies? Please visit anaphylaxis.org.uk who have compiled a list of the most frequently asked questions.

For further information on the vaccine and Ectodermal Dysplasia, please visit Should I have the Covid vaccine?

Links between Covid-19 and Ectodermal Dysplasia

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.

Covid-19 and ectodermal dysplasia article

Be Distance Aware

ED Society #DistanceAware artwork is now available to download for free, to enable you to create your own badges and lanyards. Find out more here.


Face Coverings

Now face coverings are mandatory in shops and on public transport, those affected by Ectodermal Dysplasia will struggle due breathing, overheating and other issues.

The ED Society have now created our own face covering exemption card indicating you have ED and are exempt from wearing face-coverings. Find out more

exempt card

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 – July 2020

ED & Covid – High Risk

The Government and NHS list of diseases and conditions considered to be very high risk includes people with rare diseases, Ectodermal Dysplasia would fall under this category.

We have produced a letter explaining how individuals affected by Ectodermal Dysplsia and their symptoms would class them being in this category. This letter can also offer guidance and advice if needed for those requiring help with shielding

Please use this letter, which will help by explaining ED and its symptoms to your doctor and why a patient with ED should be placed in the high risk category. You can request your GP issues a letter to that effect. They are able to use this information and Diana is happy for you to pass on her number to them discuss it further.

High Risk with Coronavirus and Ectodermal Dysplasia – Letter

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. Take a look also at our Cooling Tips.

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

Don’t hesitate to call your GP to get the most up to date advice.  Calling 111 will give information relating to everyone and not specifically those with ED and who cannot sweat.

For current and up to date information, please see the NHS page on coronavirus and the Government website.