Coronavirus and ED FAQs

Below we have the most frequently asked questions surrounding the Coronavirus and its relation to Ectodermal Dysplasia.

Does ED place me in the vulnerable category?

ED in itself doesn’t make people more susceptible​ BUT…..

• If you suffer with severe asthma, chronic chest infections or other respiratory problems, regard yourself as vulnerable
• Immunodeficiency disorders prevent your body from fighting infections and diseases. This type of disorder makes it easier for you to catch viruses and bacterial infections.  This will place you in the vulnerable category.
• If you use eye drops regularly take special care because the virus can enter through the eyes
• If you have eczema or dry skin, it is important you must still wash with soap or use hand gels containing at least 70% alcohol which may make your hands sore – use plenty of moisturiser (there is some great guidance and information on the NES and BAD websites).  Handwashing for at least 20 seconds really is the best.
• If you do contract coronavirus and have a fever, remember to take your usual precautions to avoid a very high temperature. Paracetamol is fine but ibuprofen is not advised. 

I am worried and feel I/my child should self-isolate, but we have not received a letter confirming we should do so?

Many of you have mentioned you have not received a letter or text message from the NHS saying you are at risk and should self-isolate.

From the UK’s NHS website people falling into this extremely vulnerable group include:

1. Solid organ transplant recipients.
2. People with specific cancers:
   1. people with cancer who are undergoing active chemotherapy
   2. people with lung cancer who are undergoing radical radiotherapy
   3. people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
   4. people having immunotherapy or other continuing antibody treatments for cancer
   5. people having other targeted cancer treatments which can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
   6. people who have had bone marrow or stem cell transplants in the last 6 months, or who are still taking immunosuppression drugs
3. People with severe respiratory conditions including all cystic fibrosis, severe asthma and severe COPD.
4. People with rare diseases and inborn errors of metabolism that significantly increase the risk of infections (such as SCID, homozygous sickle cell).
5. People on immunosuppression therapies sufficient to significantly increase risk of infection.
6. Women who are pregnant with significant heart disease, congenital or acquired.

The NHS in England is directly contacting people with these conditions to provide further advice.

If you think you fall into one of the categories of extremely vulnerable people listed above and you have not received a letter or been contacted by your doctor, you should discuss your concerns with them or a hospital clinician you are under the care of.

I am a key worker and still working, but I/my child at home has Ectodermal Dysplasia and I am worried I am putting myself/them at risk of Coronavirus?

Guidelines state that if you are at high risk you are not to go out at all, and where possible to work from home.  We advise you go with your gut feeling.  You know you/your child best.

However, as a key worker, this might not be possible.  This needs to be discussed with your Doctor or other medical professional who you are under the care of.  They can advise and help supply relevant information needed.

The ED Society UK are more than happy to supply a letter explaining Ectodermal Dysplasia and the symptoms causing you to be more at risk.  Please get in touch  diana@edinetwork.org

Please continue to check back here for updates as well as following the official guidelines on Government websites in your country.