Neurofibromatosis 2 (NF2)

Neurofibromatosis Type 2 (NF2) is a rare genetic disease characterised by benign (non-cancerous) tumours that occur on nerves within the body, in particular on both balance and hearing nerves, known as vestibular schwannomas or acoustic neuromas.

There are two different types of Neurofibromatosis: NF1, which affects 1 in every 3,000 people, and NF2, which affects 1 in 35,000.

In people with NF2, the tumours tend to develop on the nerves responsible for hearing and balance, causing gradual hearing loss, ringing or buzzing in the ears and unsteadiness. Some people also develop tumours inside the brain or spinal cord, or the nerves to the arms and legs, which can cause weakness in the limbs and persistent headaches.

NF2 is caused by a genetic mutation and is usually passed from parent to child. At Addenbrooke’s Hospital, we provide a comprehensive service which includes genetic testing during pregnancy and a follow up counselling service. However, in some cases, the genetic mutation will develop on its own and can only be diagnosed after birth.

Although there is no cure for NF2, we are able to help people with the condition to enjoy a good quality of life by monitoring them closely and managing their symptoms. We will discuss all treatment options with you in full, along with their risks and benefits,before deciding which will best suit you. In some cases, surgery may be appropriate, but as this can cause permanent deafness or facial weakness, it will not be suitable for all patients.

As most people with NF2 will eventually lose most of their hearing, we may recommend they have a hearing aid fitted or implants inserted. In the longer term, some people may also need a mobility device or wheelchair as their condition gets worse.

If you have been referred to us with NF2, our specialist team will answer any questions you may and give you as much advice as we can to help you manage your symptoms effectively and enjoy the best possible quality of life. We will also be able to signpost you to local and national support groups which may be able to provide further help for you and your family.  

> Neurofibromatosis type II (NF2) service

 

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