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Neurofibromatosis is a genetic disorder of the nervous system. It mainly affects how nerve cells form and grow. It causes tumors to grow on nerves. You can get neurofibromatosis from your parents, or it can happen because of a mutation (change) in your genes. Once you have it, you can pass it along to your children.
There are three types of neurofibromatosis:
There is no cure. Treatment is aimed at controlling symptoms. Depending on the type of disease and how bad it is, treatment may include surgery to remove tumors, radiation therapy and medicines.
National Institute of Neurological Disorders and Stroke
The phakomatoses are a group of genetic disorders with both neurologic and cutaneous manifestations (thus, '''neurocutaneous syndromes'''). In addition to the types of neurofibromatosis, the phakomatoses also include Tuberous Sclerosis, Sturge-Weber, and von Hippel-Lindau disease. This grouping is an artifact of an earlier time in medicine, before the distinct genetic basis of each of these diseases was understood. Currently, there are at least eight different types of neurofibromatosis. Of these eight, only the first two neurofibromatosis type I, also known as 'von Recklinghausen syndrome', and neurofibromatosis type II are widely encountered. Despite both bearing the moniker 'neurofibromatosis,' these two diseases are completely separate entities, and the reader is referred to those links for a more thorough discussion of each disease. Joseph Merrick, the Elephant Man, was once considered to have been afflicted with either elephantiasis or neurofibromatosis type I. However, it is now widely believed that Merrick suffered from the very rare Proteus syndrome.
Neurofibromatosis, Inc. - Support and information for those with Neurofibromatosis.
The National Neurofibromatosis Foundation (NNFF) - Comprehensive information sponsored by the National Neurofibromatosis Foundation for people with NF, and links to other sites.
Neurofibromatosis Resources - Links, with reviews, to information about neurofibromatosis 1 (Von Recklinghausen's disease. Personal pages.
The Neurofibromatosis Association UK - Information about the UK Association, including family support, membership details and local group contacts.
Neurofibromatosis Resources - Photographs - Photos of cafe au lait spots and external neurofibroma tumors.
Neurofibromatosis Clinic at M. D. Anderson Cancer Center - Information about neurofibromatosis and details of Center which provides diagnosis, treatment, patient education, and relevant research.
Neurofibromatosis - Information page compiled by NINDS, the National Institute of Neurological Disorders and Stroke.
British Columbia Neurofibromatosis Foundation - BCNF is a membership driven organization, which empowers individuals with NF and their families to reach their full potential by providing support, education and research funding.
Neurofibromatosis Association of Australia Inc. - Support group for people with neurofibromatosis. Has a medical and scientific advisory board and close affiliation with similar NF groups overseas.
Neurofibromatosis Network - Links to European neurofibromatosis laygroups.