In this section we discuss some of the questions that you may have regarding the Coronavirus (COVID-19), the vaccine and how it relates to you and your family.

Information and advice regarding Coronavirus (COVID-19) is changing regularly. We aim to keep the DEBRA website up to date as much as possible; however, you should always consult and follow the advice given by the Government and other regulatory authorities. If you have any further questions that are not answered below, please let DEBRA know and we can advocate on your behalf.

1) Does having EB make me or my child more prone to contracting COVID-19?

There is no known evidence that anyone with EB is more prone to contracting the virus or if contracted, that the virus is more severe in people with EB. However, for many people with EB, the possibility of contracting the virus may be cause for anxiety.

Therefore, it is important that you apply the preventative measures that are being issued by the HSE & the Department of Health in terms of maintaining social distancing, washing your hands regularly, coughing or sneezing into your elbow, and wearing a mask.

2) Should I wear a mask when I have EB?

There are no specific conditions (e.g. EB) listed as exempt under the current criteria for wearing a mask. We recommend that people with EB should follow the guidance on mask wearing insofar as possible.

The criteria set out by the Government acknowledges that there may be people who may not be able to wear a mask. Face coverings are not recommended for anyone who:

• has trouble breathing
• is unconscious or incapacitated
• is unable to remove it without help
• has special needs and who may feel upset or very uncomfortable wearing them
• needs to communicate with someone who has learning difficulties, is hard of hearing or deaf

For further information on wearing a mask, please click HERE.

3) Will there be an impact on the supply of EB medication and medical supplies?

The HPRA have stated that they do not expect any supply issues owing to COVID19. Regardless of the current situation, medications shortages can happen. If you are having difficulty accessing the necessary supplies, contact your supplier or the Family Support Team of DEBRA Ireland.

4) My prescription is due to be renewed for my EB medications and my hospital appointment has been rescheduled. What do I do now to continue getting my meds?

The Minister for Health has signed an act allowing for the electronic transfer of prescriptions to a pharmacy via an approved electronic system.  You can get your prescription from your GP or EB service. In addition, the maximum period of validity of a prescription has increased from 6 months to 9 months as of the date specified on the prescription so you should not be without your medication. Furthermore, pharmacists now have discretion in supplying an emergency supply of medication should you have ran out and your prescription has expired. For further reading on the changes implemented here, click HERE.

5) I have EB and am developing symptoms of COVID19 – what do I do?

If you believe you are developing symptoms you should follow the HSE Guidelines for the general public, notify your GP and self-isolate if appropriate.

6) Are the EB clinical teams available at the moment?

During the pandemic, cover of the EB services will always be maintained and the EB clinical teams will remain available to you to discuss any concerns you might have.

However, COVID-19 is impacting the way these teams work. For further information on this click HERE.

7) What is a COVID-19 Vaccine?

A COVID-19 vaccine is a substance that should offer protection from COVID-19. If people are vaccinated they are much less likely to become seriously ill or even die from COVID-19.

Vaccines teach your immune system to protect you from diseases. It is much safer for your immune system to learn how to protect you through vaccination than by getting COVID-19.

8) What are the benefits of getting the vaccine?

• The COVID-19 vaccine will offer protection from COVID-19. If you catch COVID-19 after vaccination you should be protected from the serious illness the virus can sometimes cause
• The vaccine is free
• If you have already had COVID-19 you still need to get the vaccine because you could become infected with the virus again
• The HSE strongly recommends that you get the vaccine

9) How will I get the vaccine?

• The HSE will let you know when it is your turn
• You will get the vaccine as an injection in your upper arm. It will only take a few minutes.
• You will need two doses, at least 3 weeks apart
• The person who will give you the vaccine will be a nurse, doctor or someone who is specially trained
• Your vaccinator will answer any questions that you may have and will provide you with an aftercare advice leaflet and vaccine record card

10) How is the vaccination programme going to be rolled out to people with EB?

From the information that is currently available and in accordance with the provisional vaccine allocation groups outlined by the government, it appears people living with EB are currently categorised by age. You can view the provisional order HERE.

DEBRA Ireland are currently advocating on behalf of those living with EB and their carers to ensure they receive the vaccination as a matter of priority. Members of the EB Community will be updated as soon as we receive further confirmation of priority groups.

Please note that from the available evidence to date, there is no data that suggests people with EB are more at risk of contracting the virus or being more adversely affected by the virus as a direct result of having EB.

11) Under what circumstances should I not get the vaccine?

• If you have had a severe allergic reaction to any of the ingredients in the vaccine, including polyethylene glycol – the vaccinator will ask you about any allergies you may have
• If you have had a severe allergic reaction to a previous dose of the vaccine
• If you currently have COVID-19 – wait until it has been 4 weeks since you first noticed symptoms or you first tested positive
• If you have a fever (temperature of 38 degrees Celsius or above) – wait until you feel better

12) What should I do in the meantime while awaiting being called for the vaccine?

Over the coming weeks and months, we have to continue practising good hand hygiene & social distancing while wearing a mask in public places. This has been a difficult year for so many but we must hold firm to ensure that the most vulnerable in our society are protected.

For the latest updates on the COVID-19 vaccination, click HERE.