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Condition

Pediatric Neurofibromatosis

What You Need to Know

Neurofibromatosis is a genetic condition characterized by changes to the skin pigment and growth of tumors on nerve tissue. 

Key Symptoms

Neurofibromatosis is characterized by these symptoms:

  • Multiple café au lait (light brown) spots
  • Neurofibromas (benign tumors growing on the sheath of a nerve) on or under the skin
  • Enlargement and deformation of bones and curvature of the spine (scoliosis)
  • Tumors that may develop in the brain, on cranial nerves, or in the spinal cord
  • Learning disabilities, in about half of people with NF1

Diagnosis

Doctors often diagnose neurofibromatosis based off of the following:

  • Specific skin, ocular and other physical findings
  • Genetic blood testing 

Treatment

While there is no cure for neurofibromatosis, effective medical care helps prevent and minimize deformities and maximize the child's capabilities. 

Schedule an Appointment

Our pediatric specialists provide personalized care for your child’s physical, mental and emotional health needs. Meet the providers who treat neurofibromatosis and schedule an appointment today.

Frequently Asked Questions

Explore frequently asked questions about neurofibromatosis.

What is neurofibromatosis?

Caring for neurofibromatosis patients

What are some complications associated with neurofibromatosis in children?

What is the diagnosis and treatment of neurofibromatosis type 2 in children?

Daniel's Story: Seeking International Expertise in Neurofibromatosis Type 1

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Daniel's neurofibromatosis diagnosis had an added complication of scoliosis. Learn more about what led his family to travel from Peru to the United States to seek expert treatment at Children's National Hospital.

Patient Stories

Departments that Treat Neurofibromatosis

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    Neurology

    Our pediatric neuroscience team is the nation's largest, bringing extensive experience to patients and families. Each of our neurologists is specially trained in child neurology with expertise in specific areas. We use advanced diagnostic tests and minimally invasive, effective treatments for complex neurological conditions.

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