Neurofibromatosis Also called: Recklinghausen’s disease, von Recklinghausen’s disease Summary 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 National Institute of Neurological Disorders and Stroke Related Issues About Learning Disabilities and NF Children’s Tumor Foundation Children Child with NF1 Children’s Tumor Foundation Neurofibromatosis (For Parents) Nemours Foundation Clinical Trials ClinicalTrials.gov: Neurofibromatoses National Institutes of Health ClinicalTrials.gov: Neurofibromatosis 1 National Institutes of Health Diagnosis and Tests Diagnosis of NF1 Children’s Tumor Foundation Diagnosis of NF2 Children’s Tumor Foundation Genetics Genetics Home Reference: neurofibromatosis type 1 National Library of Medicine Genetics Home Reference: neurofibromatosis type 2 National Library of Medicine Learn about NF Children’s Tumor Foundation Start Here Learning about Neurofibromatosis National Human Genome Research Institute Neurofibromatosis National Institute of Neurological Disorders and Stroke Neurofibromatosis National Institute of Neurological Disorders and Stroke Find an Expert March of Dimes Birth Defects Foundation March of Dimes Birth Defects Foundation National Institute of Neurological Disorders and Stroke National Institute of Neurological Disorders and Stroke Neurofibromatosis Specialists Children’s Tumor Foundation Specifics Neurofibromatosis American Association for Pediatric Ophthalmology and Strabismus 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 Array Neurofibromatosis 2 Neurofibromatosis-1 Optic glioma Statistics and Research NF Facts and Statistics Children’s Tumor Foundation Journal Articles Neurofibromatosis Videos and Tutorials What Is Neurofibromatosis? Dolan DNA Learning Center Patient Handouts What to Know about External Beam Radiation Therapy National Cancer Institute
