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How is neurofibromatosis type 1 (NF1) treated?

Scientists don't know how to prevent neurofibromas from growing. Surgery is often recommended to remove tumors that become symptomatic and may become cancerous, as well as tumors that cause significant cosmetic disfigurement. Several surgical options exist, but there is no general agreement among doctors about when surgery should be performed or which surgical option is the best. Individuals considering surgery should carefully weigh the risks and benefits of all their options so as to determine which treatment is right for them. Treatment of neurofibromas that become malignant may include surgery, radiation, or chemotherapy, which may also be used to control or reduce the size of optic nerve gliomas when vision is threatened. Some bone malformations, such as scoliosis, can be corrected surgically.

Treatments for other conditions associated with NF1 are aimed at controlling or relieving symptoms. Headache and seizures are treated with medications. Since children with NF1 have a higher-than-average risk for learning disabilities, they should undergo a detailed neurological exam before they enter school. Once these children are in school, teachers or parents who suspect there is evidence of one or more learning disabilities should request an evaluation that includes an intelligence quotient (IQ) test and the standard range of tests for evaluating verbal and spatial skills.

This answer is based on source information from the National Institute of Neurological Disorders and Stroke.

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Important: This content reflects information from various individuals and organizations and may offer alternative or opposing points of view. It should not be used for medical advice, diagnosis or treatment. As always, you should consult with your healthcare provider about your specific health needs.