What is Neurofibromatosis?

NF is caused by a mutation (or spelling mistake) in one of the genes.

About half of the people who have NF have no family history. In other words, it has occurred "out of the blue" with no-one else in the family being affected. This is called a spontaneous gene mutation. The other half of people will have inherited NF from their mother or father.

NF occurs in all races. It affects both men (and boys) and women (and girls) equally.

NF varies from one person to another even in the same family. Some people will be mildly affected with very few health problems. Others will have some serious health problems that mean that daily life is difficult and it restricts what they can do.

With a condition that varies so much, it is important to learn some basic facts about NF, and to understand when you need to seek help from your doctor.

Neurofibromatosis is in fact a term for a group of conditions affecting mainly the nervous system and skin. There are differences in the two main groups: Neurofibromatosis type 1 (NF1) and Neurofibromatosis type 2 (NF2).

It is important therefore that you are clear about the diagnosis that you have been given. NF1 and NF2 are separate and different conditions. The health checks and health care needed reflect those differences.

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