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Important information and updates about Covid-19 for ED families

Updated November 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.

How many doses of the Covid vaccine should my disabled child get?


With news that all children aged 12-15 qualify for a Covid vaccine being announced alongside significant updates to children’s clinical risk groups, autumnal booster jab eligibility and third doses, there is understandable confusion over what each child or parent carer is entitled to.

This confusion has extended to medical professionals themselves, as we’ve heard ongoing reports of parents being told their vulnerable child can’t get the vaccine dosage they’re entitled to.

What vaccine dosage can my child get and how do they book it?

Ages 12 to 17

Healthy children (not part of a clinical risk group)

Healthy children aged 12-17 in the UK are eligible for a single dose of the Pfizer vaccine.

Healthy 16- and 17-year-olds can use the national online booking servicefind a walk-in vaccination centre or wait to be invited by to a local NHS service. There is no need to wait for an invitation if they want to book now.

Healthy 12-15-year-olds can also use the national online booking service, but parental consent must be given before your child receives the vaccine. You can either complete a consent form or give your consent at the appointment. They might also receive their vaccine in school.


Children within clinical risk groups

12-17 year olds who are considered clinically vulnerable, or who live with individuals of any age who are immunosuppressed, should get two doses at least eight weeks apart. In England, around 350,000 children are eligible for two jabs.

These children will be sent a letter inviting them to arrange their vaccines at a local NHS service, such as the GP. If you think your child is eligible for a second vaccine but they don’t receive an invitation, speak to your GP.

Clinically vulnerable 16-17 year olds can also get both doses at a walk-in vaccination centre, or book their first vaccine using the national online booking service and take their invitation letter for a second vaccine to a walk-in vaccination centre.

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

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.

exempt card

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

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.