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Neurofibromatosis (NFI)

Neurofibromatosis is where growths occur along nerves affecting how the nerves can work. There are two distinct types of neurofibromatosis known as type 1 and type 2. The most common is neurofibromatosis type 1 which is also associated with swellings or lumps under the skin, coffee coloured patches of skin, clusters of freckles in unusual places (such as under the armpit) and bone or visual problems. It can also be associated with learning difficulties. Neurofibromatosis 2 tends to affect children in their teens or early adult hood and often affects the hearing nerve.

What you can do to help

Record any symptoms or signs your child has and discuss them with your GP.

How we can help

Your GP may want to refer you into see a doctor such as a paediatrician, neurologist or a geneticist to make the diagnosis.

If your child has already been diagnosed with neurofibromatosis (NFI) your GP may want you to access community services such as the physio therapy service or occupational therapy service.

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