FOP and Flu

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Flu is a matter of serious concern for a person with FOP.  Flu can bring many complications for any person who is at a higher risk of becoming seriously ill and the complications for a person with FOP contracting influenza can be catastrophic.

This is for two reasons:

Firstly, flu has been noted to cause new FOP flare-ups in sufferers.

Secondly, if they have already suffered restrictions in their chest area, catching flu could cause them to have further breathing problems which may require drastic treatment.

For these reasons, the FOP experts recommend that a person with FOP takes precautionary measures to reduce the risk of catching flu.  This also applies to the close family members and carers of the person with FOP, to reduce the likelihood of passing the virus on.

The flu vaccination programme

The NHS runs a flu vaccination programme every year which is available to people living with a health condition (such as FOP), as well as their carers.

The latest medical advice for a person with FOP is to have the flu vaccination sub-cutaneously, using the thinnest needle possible.  After the injection, it is advisable to ice the area immediately to reduce the risk of inflammation.

The vaccination should be performed by an experienced and skilled nurse, NOT a student.  Ibuprofen can also be given before and after (following the instructions on the bottle).  If a person with FOP is in active flare, they should NOT receive the vaccination.  All close family members and carers of a person with FOP should be immunised against the flu virus.

For further medical guidance visit:

ifopa.org/important_update_flu_season

Schools nasal flu programme

The NHS has rolled out a flu vaccination programme in schools, where children receive the flu nasal spray. This is a live attenuated virus and children with FOP should not receive it.  There is a risk that the live virus may cause a flare-up in a child with FOP.  Because a child who has received the spray will be carrying the live virus, it is also recommended that siblings of a child with FOP also do not receive the vaccination in this way.

  • Parents are sent an email to register ONLINE to consent or decline the nasal flu spray.
  • Parents should choose the DECLINE (red) option.
  • Where schools are still sending home paper consent forms, parents should complete the DECLINE (red) form.

Unless a child with FOP has been vaccinated against flu, they should also avoid being in contact with any child who has received the nasal spray for a few days.  As the nasal spray programme has now been rolled out to most children of primary school age, parents of a child with FOP may feel it a proportionate response to keep their child with FOP off school for a few days.

Read the NHS FAQs here.

Receiving the Flu Vaccination

The latest medical advice for a person with FOP is to have the flu vaccination sub-cutaneously, using the thinnest needle possible.  After the injection, it is advisable to ice the area immediately to reduce the risk of inflammation.

The vaccination should be performed by an experienced and skilled practitioner, NOT a student.  Ibuprofen can also be given before and after (following the instructions on the bottle).  If a person with FOP is in active flare, they should NOT receive the vaccination.  All close family members and carers of a person with FOP should be immunised against the flu virus.

For further medical guidance visit:

ifopa.org/important_update_flu_season