dedicated to awareness, education, and support for those affected by Neurofibromatosis
What is NF?
Neurofibromatosis (NF) is a genetic disorder of the nervous system which causes tumors to form on the nerves anywhere in the body at any time. This progressive disorder affects all races, all ethnic groups and both sexes equally. NF is one of the most common genetic disorders in the United States (one in every 2,500 to 3,000 births). The neurofibromatoses affects more than 100,000 Americans; this makes NF more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington’s Disease and Tay Sachs combined.
NF has three genetically distinct forms: NF-1, NF-2 and Schwannomatosis. They are caused by different genes and chromosomes. The effects of NF are unpredictable and have varying manifestations and degrees of severity. There is no known cure for any form of NF, although the genes for both NF-1 and NF-2 have been identified.
NF is an autosomal dominant genetic condition; it is not contagious. Approximately 50% of those affected with Neurofibromatosis have a prior family history of NF. The other 50% of cases are the result of spontaneous genetic mutation. If an individual does not have NF, s/he can not pass it on to his/her children.
Joseph Merrick, whose condition was depicted in the play and film, The Elephant Man, is often incorrectly thought to have had Neurofibromatosis. Merrick’s condition has been identified as Proteus Syndrome, a disorder similar to NF, but unrelated. To learn more about Proteus Syndrome, please visit the Proteus Syndrome Foundation.