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Neurofibromatosis

Neurofibromatosis refers to a group of three disorders that involve tumors of the peripheral nerves. Although not a cancer itself, neurofibromatosis is associated with certain malignancies. The three types of neurofibromatosis are called NF1, NF2 and schwannomatosis. Your neurofibromatosis care team may include orthopaedic surgeons who specialize in removing tumors in and around the bones.

Neurofibromatosis: What You Need to Know

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  • Neurofibromatosis often is identified in childhood, but it may go undiagnosed in some people until they reach their 30s or 40s.
  • You or your child will be diagnosed based on an examination and genetic testing.
  • The symptoms of the various types of neurofibromatosis vary. People with NF1 may exhibit brownish “cafe au lait” patches on their skin. People with NF2 may experience tinnitus (ringing in the ears). Those with schwannomatosis may experience chronic pain.
  • Treatment for neurofibromatosis also varies depending on the type and whether or not the condition is associated with cancer tumors. Surgery, including orthopaedic surgery, may be part of your treatment plan.

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Why Choose Johns Hopkins for treatment of neurofibromatosis?

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