زندگی با نوروفیبروماتوز Living with NF

NF1 - A progressive disorder, which means most symptoms will worsen over time, although a small number of people may have symptoms that stay the same and never get any worse.  It isn't possible to predict the course of any individual's disorder.    In general, most people with NF1 will develop mild to moderate symptoms, and if complications arise they will not be life-threatening.  Most people with NF1 have a normal life expectancy.

NF2 - This rare disorder affects about 1 in 40,000 people and is characterized by slow-growing tumors on the eighth cranial nerve. This nerve has two branches: the acoustic branch helps people hear by transmitting sound sensations to the brain; the vestibular branch helps people maintain their balance. The tumors of NF2, called vestibular schwannomas, press against and sometimes even damage the nerves they surround.  In some cases they will also damage nearby vital structures such as other cranial nerves and the brainstem, leading to a potentially life-threatening situation. Individuals with NF2 are at risk for developing other types of nervous system tumors such as spinal schwannomas, which grow within the spinal cord and between the vertebrae, and meningiomas, which are tumors that grow along the membranes covering the brain and spinal cord.

Schwannomatosis - A newly recognized neurofibromatosis that is genetically and clinically distinct from NF1 and NF2.  Like NF2 it occurs rarely.  Inherited forms of the disorder account for only 15 percent of all cases.  Researchers still don't fully understand what causes the tumors and the intense pain that are characteristics of the disorder