Neurofibromatosis (NF) is a lifelong, progressive, genetic disorder that causes tumors to form on nervous system tissue. These tumors can develop anywhere in the brain, spinal cord and nerves. There are two different types of NF, type 1 (NF1) and type 2 (NF2). Symptoms of NF1 and NF2 generally are very different:

  • NF1 is more common and characterized by brown skin marks called café-au-lait spots, and growth of tumors along nerves in the skin, brain, eye and other parts of the body.
  • NF2 is less common and causes a type of tumor called a vestibular schwannoma, also known as an acoustic neuroma, which is the most common type of NF2 tumor. These generally non-cancerous tumors may cause hearing loss, deafness, dizziness and balance problems. Other types of tumors in the brain and spinal cord also occur.

Expert care for complex needs

NF has a wide variety of symptoms and effects. At the UW Cancer Center at ProHealth Care, our team offers:

  • A collaborative approach – NF affects patients in different ways, so we bring together neuro-oncology, surgery, radiology and other specialties to ensure patients have a unified approach to routine and complex care. 
  • Diagnostics, treatment and imaging - The most advanced diagnostic imaging and treatment options for NF are available, including high resolution MRI, PET and CT scans. 
  • Care coordination – A nurse serves as the main contact for clinic patients and provides ongoing continuity of care. 
  • Genetic counseling - Patients with NF may receive support and education, including:
    • Updates about current NF information and research
    • Review of how NF is inherited and family planning
    • Options for genetic testing 
    • Access to NF resources, support organizations and events

During an initial NF appointment, patients typically are seen by a neuro-oncologist, care coordinator and genetic counselor. Patients may be referred to other specialists as needed.

Learn more

If you have been diagnosed with NF or need help managing symptoms, please call the UW Cancer Center at ProHealth Care at 262-696-0909 to schedule an appointment.