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Living with NF
What is NF?

Neuro…what? That is most people’s reaction when they first hear about neurofibromatosis. Most people have never heard of it, even though more people have NF than Cystic Fibrosis, Duchenne Muscular Dystrophy, Tay Sachs Disease, and Huntington’s Disease combined.


Neurofibromatosis type 1 (NF1) is the most common form of NF, characterised by multiple cafe-au-lait spots and neurofibromas on or under the skin. It can affect nerves throughout the body, and occasionally, tumours may develop in the brain or on the spinal cord.


Individuals with NF2 have fewer outside signs of the condition than those with NF1. Early symptoms include dysfunction of the acoustic (hearing) nerve, which carries information about sound to the brain, and the vestibular nerve, which carries balance information to the brain. This form of NF affects 1 in 30,000 people.


Schwannomatosis is a rare form of NF that has only recently been recognised and appears to affect around 1:30,000 individuals. People with Schwannomatosis develop multiple Schwannoma on cranial, spinal and peripheral nerves. The first symptom of Schwannomatosis is almost always pain, which can occur in any part of the body.


A Child with NF

Learning that a child has – or may have – neurofibromatosis can be a very difficult experience. Often it comes as totally unexpected news about a child who appears to be healthy except for the presence of some innocent-looking brown spots on the skin.

Learning Difficulties

NF may affect the way some people learn. These problems make learning difficult, but NOT impossible! It is important to remember that children with learning disabilities are more LIKE their peers than unlike them. What is different is HOW they learn.

NF Support

The Children’s Tumour Foundation of Australia can provide information to support people with NF and their families, carers, and friends. This includes a list of local support contacts and a collection of useful websites so that those with NF and their families can feel more in control and better able to cope.




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