NF2 is a rare genetic disorder that is caused by a misprint in a single gene on Chromosome 22. The misprinted gene will be present at birth, but signs of the condition do not usually appear until the teenage years, twenties or later.
NF2 may be passed on from parent to child at the time of conception, or it may start in a family with no previous history of the disorder. It occurs in 1 in 35000 of the population and is often life limiting.
A person who has NF2 has a 50% (or 1 in 2) chance of passing on the condition to each of his/her children. NF2 is a variable and unpredictable condition affecting different people in different ways. The disorder is usually diagnosed by MRI scans.
In NF2 people develop nervous system tumours (lumps) typically in the brain and spine. These tumours are mainly benign, but they can cause hearing loss, deafness, and mobility problems due to the pressure exerted on key nerves.
NF2 is very different to NF1 in that virtually all people with NF2 will need operations or other treatments for NF2 related brain or spinal cord tumours at some time.
At any one time in England there are around 860 people with NF2 and about 38 people receive the diagnosis for the first time each year.