COVID-19 VACCINES
AND EB

There are now a number of COVID-19 vaccines that have been approved for use. Arguably, the four most well-known and widely available vaccines at the moment are the Pfizer/BioNTech mRNA vaccine, the Oxford/AstraZeneca adenovirus vector vaccine, the Moderna mRNA vaccine, and the Johnson & Johnson/Janssen adenovirus vector vaccine. A number of other COVID-19 vaccines have been approved for use in some countries.

Whilst the roll-out of these vaccines is certainly a positive and welcomed development, there are questions and concerns about whether vaccination against SARS-CoV-2 (the virus that causes COVID-19) is safe for people living with hereditary EB and whether they should be prioritised to receive it. Widespread misinformation online about the COVID-19 vaccines and vaccines in general can also cause additional worry.

 

We have put together the following general and EB-specific information on vaccination against SARS-CoV-2 to address some of the concerns you may have. All information has been derived from reputable sources and been reviewed by EB clinical experts. It is important to note that we are learning more about both COVID-19 itself and the different vaccines that are being developed all the time. We will endeavour to provide updates on this page as and when new information is released.

 

If you have any questions or concerns about vaccination, consult your healthcare provider and/or EB healthcare team.

Disclaimer: any and all medical information provided by DEBRA International on this website are intended for informational purposes only. Information is not intended to substitute the care and guidance given by a qualified physician or other allied healthcare professional. Always seek the advice of your physician prior to starting any medications or treatment regimens. DEBRA International does not endorse any drugs, tests, or treatments that we may report.

Last updated 14 September 2021

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INFORMATION
BOOKLET

 

All of the information on this page can also be found in our COVID-19 vaccines and EB information booklet, which you can download here for free to use and share.

The latest, third edition of the booklet, which addresses the latest information about the Johnson & Johnson/Janssen adenovirus vector vaccine, booster vaccines, and administering COVID-19 vaccines to the paediatric population is available in English and Brazilian Portuguese.

The second edition is available in Spanish, whilst the first edition is available in French and Polish. We are working hard to bring these documents up to date in the line with the latest third edition.

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COVID-19 vaccines and EB (3rd edition)

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Vacunas frente al COVID-19 y EB (2ª edición)

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Vaccins COVID-19 et EB (1ère édition)

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COVID-19 vacinas e EB (terceira edição)

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Szczepionki przeciw COVID-19 a EB (pierwsza edycja)

 

EB AND THE
COVID-19 VACCINE

The following information relates to those with a form of hereditary EB (EB simplex, dystrophic EB, junctional EB, Kindler EB) and to known data of the Pfizer/BioNTech mRNA vaccine, the Oxford/AstraZeneca adenovirus vector vaccine, the Moderna mRNA vaccine, and the Johnson & Johnson/Janssen adenovirus vector vaccine.

I have EB…

… is it safe for me to be vaccinated with the COVID-19 vaccine?

Yes. There is no evidence to suggest that people with hereditary EB should avoid getting vaccinated. However, if you have a known allergy to any of the components in a particular COVID-19 vaccine, consult your healthcare provider and an allergist/immunologist before receiving the COVID-19 vaccine in question.

… should I get the COVID-19 vaccine?

Yes. Vaccination to help prevent the spread of a disease-causing virus is essential for the global population, including people with EB. Vaccination is strongly recommended for patients with all types of EB, particularly those with severe mucocutaneous fragility and systemic complications, such as malnutrition and cardiomyopathy, among others. If  you have any questions or concerns about being vaccinated, consult your healthcare provider and/or EB healthcare team.

… will I be prioritised for vaccination?

This will depend on where you live as each country will have its own plan for deciding the order in which people are vaccinated. If you have any questions or concerns regarding when you are likely to receive your COVID-19 vaccine, consult your healthcare provider/EB healthcare team.

… and I am enrolled in a gene therapy clinical trial, can I get the COVID-19 vaccine?

Anyone with EB currently participating in a gene therapy clinical trial should contact the trial provider for confirmation before receiving the vaccine.

… and I am over 65, am I allowed to get the vaccine?

Adults with EB are recommended to be vaccinated regardless of their age. Every country is managing their vaccination programmes in different ways, some of which limit the types of vaccines allowed for different age groups.

 

My child has EB…

… when can my child be vaccinated?

Whether or not your child can be vaccinated with a COVID-19 vaccine depends on the country you live in. In some countries, children aged 12 years and older are able to get a COVID-19 vaccine whereas in other countries access is limited to higher age groups (such as 16 years and older) and/or to younger children/teenagers who have a higher risk of getting seriously ill from COVID-19, or who live with someone at high risk of catching it. If you have any questions or concerns about your child being vaccinated, consult your child’s healthcare provider and/or EB healthcare team.

COVID-19
VACCINES

 

The following information relates to known data of the Pfizer/BioNTech mRNA vaccine, the Oxford/AstraZeneca adenovirus vector vaccine, the Moderna mRNA vaccine, and the Johnson & Johnson/Janssen adenovirus vector vaccine.

How do the COVID-19 mRNA vaccines work?

mRNA vaccines teach the body’s cells how to make a (piece of a) protein that triggers an immune response inside the body. The mRNA vaccine gives instructions for our cells to make a harmless piece of the “spike protein” that is found on the surface of the virus that causes COVID-19. Once the protein piece is made, the cell breaks down the instructions and gets rid of them. If someone is subsequently exposed to COVID-19, their body’s immune system recognises the spike protein on the surface of the virus and makes antibodies that destroy SARS-CoV-2 therefore protecting the person from developing the disease.

How does the COVID-19 adenovirus vector vaccine work?

Like an mRNA vaccine, the adenovirus vector vaccine delivers instructions to the body’s cells to create a harmless piece of the “spike protein” that is found on the surface of the virus that causes COVID-19 in order to trigger an immune response. Unlike the mRNA vaccine, the instructions are delivered using a virus (the vector) that we know is harmless.

Are the COVID-19 vaccines safe?

Yes, the COVID-19 vaccines are safe and effective. They have been evaluated in tens of thousands of participants in clinical trials and have now been given safely to tens of millions of people across the world.

Which is the best vaccine to have?

In this case, “any vaccine is a good vaccine.” All four vaccines have been shown to be safe and to work well at preventing disease from the virus, including newer variants. Each country has its own regulators that decide which vaccines are approved for use. It is unlikely that you will be able to choose which vaccine you have so it is important to have the vaccine you are offered.

What are the side effects of the COVID-19 vaccines?

Common side effects include pain and/or swelling from the injection site and a fever, chills, tiredness, and/or a headache. If any side effects are worrying you or do not seem to be going away after a few days, contact your healthcare provider.

Should I be worried about having an allergic reaction to the COVID-19 vaccines?

A very small number of people have had a severe allergic reaction (called “anaphylaxis”) after vaccination, but this is extremely rare. If this does occur, vaccination providers will have medicines available to effectively and immediately treat the reaction. Unless you have had an allergic response to vaccines in the past, you should not be worried about this with a COVID-19 vaccine. If you have a known allergy to any of the components in a particular COVID-19 vaccine, consult your healthcare provider and an allergist/immunologist before receiving the COVID-19 vaccine in question.

Should I be worried about getting blood clots if I receive the Oxford/AstraZeneca or the Johnson & Johnson/Janssen adenovirus vector vaccines?

According to the European Medicines Agency (EMA), unusual blood clots with low blood platelets are very rare side effects of these vaccines. The overall benefits of these vaccines in preventing COVID-19 outweigh the risks of side effects. Anyone who receives either of these vaccines should seek medical assistance immediately if they develop symptoms of this combination of blood clots and low blood platelets:

  • shortness of breath

  • chest pain

  • swelling in your leg

  • persistent abdominal (belly) pain

  • neurological symptoms, including severe and persistent headaches or blurred vision

  • tiny blood spots under the skin beyond the site of injection

Can a COVID-19 vaccine make me sick with COVID-19?

No. None of the fourvaccines contain the live virus that causes COVID-19, which means that a COVID-19 vaccine cannot make you sick with the virus. It is possible, however, to have caught COVID-19 and not realise you have the symptoms until after your vaccination appointment.

Will I be immediately protected from COVID-19 after my first vaccination?

It may take up to a couple of weeks for your body to build up some protection from the first dose of the vaccine. Like all medicines, no vaccine is 100% effective so you should continue to take recommended precautions to protect yourself from catching COVID-19 and to prevent spreading it to others. Some people may still get the virus despite having a vaccination, but the symptoms should be less severe.

If I have already had COVID-19 and recovered, do I still need to get vaccinated with a COVID-19 vaccine?

Yes. You should be vaccinated regardless of whether you have already had COVID-19 as experts do not yet know how long you are protected from getting sick again after recovering from the disease. If you have had a positive COVID-19 test, you are advised to wait 28 days before receiving the COVID-19 vaccine.

Do the COVID-19 vaccines contain pork or other animal products?

No. None of the COVID-19 vaccines contain any products derived from animals.

Will I receive a COVID-19 vaccine booster?

The need for a one-time or regular booster doses of the COVID-19 vaccine and to whom these would be administered are not yet fully known by scientists; however, there is a growing list of countries that have begun to develop booster programmes for (some of) their population.

Where can I find reputable sources of information about the COVID-19 vaccines?

Consult your national government and/or health authority for information on COVID-19 vaccines approved in your country. If you have any questions or concerns, consult your healthcare provider and/or EB healthcare team.

Myth busting facts

MYTH: The COVID-19 vaccine can affect women's fertility

FACT: the COVID-19 vaccine will not affect fertility. Confusion arose when a false report surfaced on social media saying that the spike protein on the SARS-CoV-2 virus was the same as another spike protein called syncytin-1 that is involved in the growth and attachment of the placenta during pregnancy.

MYTH: The COVID-19 vaccine was developed with or contains controversial substances.

FACT: the COVID-19 vaccines were not developed using foetal tissue and they do not contain any material, such as implants, microchips, or tracking devices.

MYTH: The COVID-19 vaccine enters your cells and changes your DNA.

FACT: the COVID-19 vaccines do not affect or interact with your DNA in any way. The mRNA vaccine never enters the nucleus of the cell, which is where DNA is kept. The cell breaks down and gets rid of the mRNA soon after it finishes using the instructions. The genetic material delivered by the viral vector vaccine does not integrate into a person’s DNA.

MYTH: Researchers rushed the development of the COVID-19 vaccine so its effectiveness and safety cannot be trusted.

FACT: the COVID-19 vaccines are safe and effective and there are many reasons why they could be developed so quickly, including:

  • The method used to create the Pfizer/BioNTech and Moderna COVID-19 vaccines has been in development for years so the companies could start the vaccine development process early in the pandemic.

  • China isolated and shared genetic information about COVID-19 promptly so researchers could commence work on vaccines.

  • No steps were skipped during testing of the vaccines but some overlapped in order to gather data more quickly.

  • Vaccine projects had plenty of resources as governments invested in research and/or paid for vaccines in advance.

  • Some types of COVID-19 vaccines were created using mRNA, a faster approach than traditional methods of vaccine creation.

  • Social media helped companies to recruit study volunteers and many were willing to help with COVID-19 vaccine research.

  • Because COVID-19 is so contagious and widespread, it did not take long to see if the vaccine worked for the study volunteers who were vaccinated.

  • Companies began making vaccine early on so supplies were ready to ship when approvals happened.

VACCINES
IN GENERAL

 

What is a vaccine?

A vaccine is a type of medicine that trains the body’s immune system to fight a disease it has not come into contact with before. Vaccines are designed to prevent rather than treat a disease. It is much safer for your immune system to be trained through vaccination rather than by catching a disease and learning how to treat it itself.

How do vaccines work?

There are different types of vaccines that work in different ways to offer protection. With all types of vaccines, the body is left with a supply of “memory” defensive white blood cells called T-lymphocytes and B-lymphocytes that will remember how to fight a particular disease in the future.

Why are vaccines important?

Vaccination is the most important thing we can do to protect ourselves against ill health. Vaccines prevent up to 3 million deaths worldwide every year. If people stop having vaccines, it is possible for infectious diseases to quickly spread again. A vaccine is a type of medicine that trains the body’s immune system to fight a disease it has not come into contact with before. Vaccines are designed to prevent rather than treat a disease. It is much safer for your immune system to be trained through vaccination rather than by catching a disease and learning how to treat it itself.

What is herd immunity?

When a high percentage of a population is vaccinated, it is difficult for infectious diseases to spread because there are not many people who can be infected. This offers a greater level of protection for people who are unable to be vaccinated because of illness or a weakened immune system.

What is in a vaccine?

The main ingredient of any vaccine is a small amount of bacteria, virus, or toxin that has been weakened or destroyed in a laboratory first. This means that there is no risk of catching a disease from a vaccine. Vaccines sometimes contain other ingredients that make the vaccine safe and more effective.

What are the side effects and why do they happen?

Most side effects from a vaccine are mild and not long lasting. Serious side effects from a vaccine are extremely rare. Common side effects are from the injection site including soreness/pain, redness, and/or swelling. Other side effects experienced, may include flu-like symptoms, such as headaches or fever.

What happens if I have an allergic reaction to a vaccine?

It is rare for anyone to have a serious allergic reaction to a vaccine. If this does happen, it usually happens within minutes and the person vaccinating will be trained to deal with and treat the allergic reaction immediately.

Myth busting facts

Vaccines do:

  • protect those vaccinated from many serious and potentially deadly diseases

  • protect other people by helping to stop diseases from spreading to those who cannot have vaccines

  • undergo rigorous safety and efficiency testing in clinical trials before being administered to the wider population

  • sometimes cause mild side effects but these do not usually last long. Vaccines may also cause stronger side effects or a reaction, but these occurrences are incredibly rare

  • reduce or even eliminate some diseases if enough people are vaccinated

Vaccines do not:

  • cause autism

  • overload or weaken the immune system

  • cause allergies or any other conditions