Updated 3rd 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.
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
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
How is guidance to those shielding (clinically extremely vulnerable) being relaxed?
From 6 July, the government will be advising that the clinically extremely vulnerable:
- may, if they wish, meet in a group of up to 6 people outdoors, including people from different households, while maintaining strict social distancing
- no longer need to observe social distancing with other members of your household
- in line with the wider guidance for single adult households (either an adult living alone or with dependent children under 18) in the general population, may from this date, if you wish, also form a ‘support bubble’ with one other household. All those in a support bubble will be able to spend time together inside each other’s homes, including overnight, without needing to socially distance
This is a small advisory change that brings those affected a step nearer others in their communities. However, all the other current shielding advice will remain unchanged at this time.
From 1 August, the government will be advising that shielding will be paused. From this date, the government is advising you to adopt strict social distancing rather than full shielding measures. Strict social distancing means you may wish to go out to more places and see more people but you should take particular care to minimise contact with others outside your household or support bubble.
In practice, this means from 1 August you are advised that you no longer need to shield. This means that from 1 August, the government will be advising:
- you can go to work, if you cannot work from home, as long as the business is COVID-19 Secure
- children who are clinically extremely vulnerable can return to their education settings if they are eligible and in line with their peers. Where possible children should practise frequent hand washing and social distancing
- you can go outside to buy food, to places of worship and for exercise but you should maintain strict social distancing
- you should remain cautious as you are still at risk of severe illness if you catch coronavirus, so the advice is to stay at home where possible and, if you do go out, follow strict social distancing
The guidance for the clinically extremely vulnerable group remains advisory. More detailed advice will be updated into this guidance as the changes in advice come into effect on 6 July and 1 August.
£10 million announced to help children in England during Coronavirus pandemic
Families with children who have complex needs and disabilities can now apply for a grant from Family Fund. This grant will be for vital equipment to make their lives easier during the pandemic including computers, specialist equipment and educational toys.
£10 million of the total £37 million of direct support announced by the Children and Families Minister Vicky Ford today, is committed specifically in response to the unique difficulties presented by the coronavirus pandemic, helping parents educate and look after disabled children or those with additional needs who are staying home more than usual.
The government hopes the grant will help low-income families with seriously ill or disabled children with the cost of items they might not otherwise be able to afford during these times.
The grants available are typically worth £400 to £500 per family, but will vary depending on need.
Families can find out more and apply for grants directly from Family Fund. Family Fund are a charity that specialises in providing grants for families raising disabled, seriously ill children and young people.
Are you having difficulty getting online food delivery slots?
While shelves inside the supermarkets are now well stocked, it is proving difficult for families with children who have additional needs, and those who are supposed to be shielding, to secure delivery slots.
Contact for families have supplied some great information and advice about this, which they are updating regularly.
Guidance on coronavirus testing, including who is eligible for a test, how to get tested and the different types of test available has now been updated.
Unpaid carers such as parents with children who have a condition or disability, have now been added to the list of essential workers & those prioritised for COVID19 testing in England.
You can find out more on the Gov.uk website if your are eligible and the various ways to get a test including home testing.
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.
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.
We have put together some FAQs which we hope will help to answer this for you.
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.
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.
The coronavirus (COVID-19) is 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. Take a look also at our Cooling Tips.
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.