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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. Usually the tumors are benign, but sometimes they can become cancerous.
There are three types of neurofibromatosis:
- Type 1 (NF1) causes skin changes and deformed bones. It usually starts in childhood. Sometimes the symptoms are present at birth.
- Type 2 (NF2) causes hearing loss, ringing in the ears, and poor balance. Symptoms often start in the teen years.
- Schwannomatosis causes intense pain. It is the rarest type.
Doctors diagnose the different types based on the symptoms. Genetic testing is also used to diagnose NF1 and NF2. There is no cure. Treatment can help control symptoms. Depending on the type of disease and how serious it is, treatment may include surgery to remove tumors, radiation therapy, and medicines.
NIH: National Institute of Neurological Disorders and Stroke
- Learning about Neurofibromatosis (National Human Genome Research Institute)
- Neurofibromatosis (National Institute of Neurological Disorders and Stroke)
- About Learning Disabilities and NF (Children's Tumor Foundation) - PDF
- About Neurofibromatosis 1 (Children's Tumor Foundation) - PDF
- Neurofibromatosis (American Association for Pediatric Ophthalmology and Strabismus)
- Newly Diagnosed with NF2 (Neurofibromatosis Type 2): A Guide to the Basics (Children's Tumor Foundation) - PDF
- Schwannomatosis (Children's Tumor Foundation)
- Segmental NF: A Guide for Patients (Children's Tumor Foundation)
- Vestibular Schwannoma (Acoustic Neuroma) and Neurofibromatosis (National Institute on Deafness and Other Communication Disorders)
- Learn about NF (Children's Tumor Foundation)
- Neurofibromatosis type 1: MedlinePlus Genetics (National Library of Medicine)
- Neurofibromatosis type 2: MedlinePlus Genetics (National Library of Medicine)
- Schwannomatosis: MedlinePlus Genetics (National Library of Medicine)
- ClinicalTrials.gov: Neurofibromatoses (National Institutes of Health)
- ClinicalTrials.gov: Neurofibromatosis 1 (National Institutes of Health)
Journal Articles References and abstracts from MEDLINE/PubMed (National Library of Medicine)
- Article: Population-specific facial traits and diagnosis accuracy of genetic and rare diseases...
- Article: Orbito-facial plexiform neurofibromatosis: a rare clinical image.
- Article: COVID-19 in people with neurofibromatosis 1, neurofibromatosis 2, or schwannomatosis.
- Neurofibromatosis -- see more articles
Find an Expert
- March of Dimes Foundation Also in Spanish
- National Institute of Neurological Disorders and Stroke Also in Spanish
- Neurofibromatosis Specialists (Children's Tumor Foundation)
- Neurofibromatosis Type 1 (For Parents) (Nemours Foundation) Also in Spanish
- Facing Neurofibromatosis: A Guide for Teens (Children's Tumor Foundation) - PDF
- Neurofibromatosis 2 (Medical Encyclopedia) Also in Spanish
- Neurofibromatosis-1 (Medical Encyclopedia) Also in Spanish
- Optic glioma (Medical Encyclopedia) Also in Spanish