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Many people with FOP struggle with their hearing.  Up to one third of people with FOP report needing to wear a hearing aid of some sort, and report complete loss in one or both ears. Source: IFOPA’s FOP Registry

People with FOP are at a greater risk for hearing loss, with the onset usually in childhood or adolescence. Generally, it is a conductive hearing loss with a slow progression.

The loss may be due to the small bones within the middle ear fusing together.  Parents and carers of small children need to be aware of this and be alert to key indicators such as the child not responding to instructions; asking for things to be repeated; continually replying with ‘What?’; using a louder voice than necessary; or simply having the tv or music on too loud.

If a hearing problem is suspected, parents or carers should arrange to go to the GP for referral to an audiologist.  It is important to explain the link between FOP and hearing loss to a GP or medical practitioner as they may not be aware of the connection.

However, routine hearing tests are recommended for all people with FOP, so that any potential problems can be identified for early intervention where appropriate.

To read more about hearing loss and FOP, please read Chapter 13 in ‘What is FOP? A Guidebook for Families’.

There is also information for medical practitioners in the ICC Clinical Guidelines about hearing loss and FOP.

For further general information about hearing loss, please visit the website for the Royal National Institute for Deaf People https://rnid.org.uk/

There is additional guidance and strategies for helping a child with FOP in the ‘Supporting a Child with FOP: a practical guide to their learning journey’ book.

Hearing Impairment

This short video provides information on how and why people with FOP often suffer from hearing impairment. It includes information by Frederick Kaplan, M.D. and Dr. Eileen Shore, Ph.D. of the University of Pennsylvania School of Medicine.  From 2009.

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