Updated 12th January 2021 –
New Year, New Lockdown
It is a worrying time for all with the new variant of Covid, numbers rising and the UK now in its third national lockdown.
We know a lot of our ED members will have already received their letters being advised to shield again. If you are at all anxious or worried and feel you should be shielding too, but are struggling with obtaining a letter, please use our ED and Covid High Risk letter.
With regards to Covid and ED, our advice pretty much remains the same. You are likely to be more vulnerable if you have a suppressed immune system and are prone to numerous illnesses and infections, have any breathing difficulties/chest infections and suffer with asthma.
Remember to be vigilant regarding running a high temperature should you contract Covid-19. As with any other infection/fever, keep a close watch on your temperature to avoid overheating. Please follow all the steps you usually would to help regulate your temperature back to a safe level.
Please have a look at our cooling section for advice and tips on how best to keep cool.
Although talks of this new variant seems scarier than before, one thing to remember is that we are advised there is currently no evidence this variant is any more severe than before, but appears to have mutated in such a way that the speed of spread has increased. Stay safe and remember to get in touch with us should you have any questions or concerns, and we will do our best to help resolve them.
There are two vaccines currently authorised for supply in the UK, The Pfizer/BioNTech vaccine and Vaccine AstraZeneca. A third has just 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
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?
Protecting people more at risk from coronavirus
If you are clinically vulnerable, you could be at higher risk of severe illness from coronavirus. There is additional advice for people who are clinically extremely vulnerable to coronavirus. Those who are clinically extremely vulnerable should not attend work, school, college or university, and limit the time you spend outside the home. You should only go out for medical appointments, exercise or if it is essential.
You can find all the new and updated rules on the GOV.UK website here.
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.
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.
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
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
Many of you in the ED community have not received a letter from the NHS regarding isolating due to possibly being at high risk with Ectodermal Dysplasia. We want to help all we can.
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.
Covid – 19 Guide for ED
We would like to give a big thank you to Envision Pharma Group. They have contacted us and offered their time and resources for FREE to help come up with a great guide on Coronavirus for our Ectodermal Dysplasia community. You might remember Envision Pharma group when we released our children’s book, Everybody’s Different, last year. They again created it for us free. We cannot thank them enough for all of their support over this last year.
Overcoming Coronavirus with ED
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.
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. 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
Do I need to avoid public places?
Stay at home and Stay Alert
- 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 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.