Neurofibromatosis Type1

What is Neurofibromatosis Type1?

Neurofibromatosis type 1 (NF1) is an inherited condition causing tumours on nerve tissue anywhere in the body and a variety of other effects. It occurs in 1 in 3000 people and affects boys and girls equally. In 1882 a German pathologist called Freidrich Daniel von Recklinghausen first characterised the tumours in  neurofibromas which consist of mingling of nerve cells and fibrous tissue.The main features include six or more cafĂ© au lait (CAL) spots on the skin, freckling in the armpits or groin area, brown spots on the irises (Lisch nodules) and lumps under the skin (neurofibroma). NF1 is sometimes referred to as von Recklinghausen syndrome. NF1 is usually is a fairly benign condition but occasionally can cause more serious complications most of which can be effectively treated especially if detected promptly. For more information about Neurofibromatosis Type 1 click here.    

Newly Diagnosised with NF1 a guide to the basics

Useful Websites

The Children's Tumour Foundation - www.ctf.org - this site is really user friendly and has some great information about NF and management.

The Neurofoundation - www.nfauk.org - this website has several infomative fact sheets for all sorts of situations and purposes. Click here to be taken to the factsheet page, links to what they cover are listed below:

learning and Behaviour in NF1

Support Groups

Check out the support groups page to see what is available in your area.

This page was reviewed 1 APR 2016