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Support for Medics (NF2)

Neurofibromatosis Type 2 (NF2) a rare genetic condition caused by a “misspelling” on chromosome 22. NF2 occurs in 1 in 30,000 of the population.

Many GP’s, paediatricians, geneticists and nurses may never have come across a case of NF1 or NF2 during their professional life. When they do, there is often a need to supply some basic information to the patient as well as to obtain the latest information about the condition.

Many medics, research professionals and health organisations look to us to to provide them with the necessary education surrounding NF by continually update our archive of information, medical research and current treatment regimes for them to access when required.

Neurofibromatosis is a collective name for a group of conditions: Neurofibromatosis Type 1, Neurofibromatosis Type 2, Schwannomatosis and Legius Syndrome. Three of the four conditions cause nerve tumours, and all involve health complications. 

NF2 is different to NF1 because people will need operations or other treatments for brain or spinal cord tumours. Also, people will develop tumours typically in the brain and spine. The hallmark of NF2 is the development of benign tumours called vestibular schwannomas (formerly called Acoustic Neuromas) which grow on both hearing nerves. These tumours can cause hearing loss, deafness, and mobility problems due to the pressure exerted on key nerves. Some people with NF2 have a few benign tumours on the skin nerves but, in contrast to NF1, have few, if any, café au lait spots. 

In addition to these, other benign tumours associated with the nervous system may occur, in particular:

  • The lining of the brain (meningiomas) 
  • The spine (meningiomas, schwannomas) 
  • The skin (schwannomas)

NF2 can also cause some ocular (eye) changes such as cataracts. These are often present from an early age but may not cause any significant visual problems.

NF1 and NF2 are very different conditions and it is extremely unlikely that your patient would have both NF1 and NF2. 

NF2 can also be passed on from parent to child at the time of conception, a person who has NF2 has a 50% (or 1 in 2) chance of passing on the condition to his/ her children. 

Nerve Tumours UK Specialist Support 

Nerve Tumours UK is the leading voice for Neurofibromatosis support in the United Kingdom and we play a crucial role for anyone living with nerve tumours. One way in which we maintain this position is by funding a network of Support Specialists. 

Our specialists are highly qualified professionals with a background in nursing, social work or occupational therapy. They all work from a hospital base in their region, and collaborate with many other professionals involved in the care of patients with nerve tumours. They provide an all-encompassing support service that follows an individual through all stages of their life. You can call our Helpline and ask for a referral. 


Some helpful information and resources