Vaccinations for children with epidermolysis bullosa (EB)

EB is a rare inherited skin condition that causes the skin to become very fragile. Any trauma or friction to the skin can cause painful blisters.

EB is caused by a faulty gene (gene mutation) that results in certain proteins in the skin forming incorrectly. This means they are unable to fulfil their role in attaching the layers of skin together, so the skin is more fragile.

There is currently no cure for EB, so treatment aims to relieve symptoms and prevent complications developing, such as infection.

The benefits of vaccination far outweigh any injury to the skin during the process. We recommend that routine childhood vaccinations are given as usual to ensure we can protect ourselves and our children against infectious diseases.

Further information on vaccinations can be found on the NHS England website, or by contacting your GP, health visitor or school-based immunisation team.

The nasal spray flu vaccine is a live vaccine given to children over two years old. It is given as a fine spray into each nostril and is safe to administer to children with EB. (Unless your child is immunosuppressed or has any other known contraindication to the vaccine).

Make the GP practice or team administering the vaccination aware that your child has EB and explain how EB affects your child. EB is rare, and even the most experienced professional may never have come across it before. Your EB nurse will be happy to provide further information.

Fragile skin damages easily. During vaccination skin may blister from either the administration of the vaccine itself, or from handling during the procedure. To reduce these risks, we recommend:

• Avoid wearing gloves if possible. If local policy dictates the use of gloves, apply soft white paraffin 50:50 or Emollin spray to the fingertips to prevent friction with the skin.
• Parents and carers are experts on handling. Ask them how it’s best for you to hold their child, or ask if they can sit the child on their lap and hold the leg/arm gently but firmly.
• Avoid rubbing at any stage. Use a dabbing motion if the skin is dirty and you need to clean it.
• Administer the vaccination in the same way as usual.
• DO NOT apply sticking plasters to EB skin- they cause unnecessary damage. If you need to apply a plaster, use a small silicone based dressing, for example, Mepilex border-lite.

MyGOSH (for non-urgent queries)

Telephone: 0207 405 9200 Ext 7808 or 5053

Email: gos-tr.ebnurses@nhs.net