NF-2 is sometimes referred to as central neurofibromatosis or bilateral acoustic neuroma disease. NF-2 is different for each person, but because it affects nerves next to the brain or spinal cord, the problems of NF-2 can cause serious disabilities. Even so, many people with NF-2 can lead relatively normal, rewarding lives and learn to compensate for deficits they may have.
In some people signs of the disorder are detectable in childhood, but for the majority of people, NF-2 is not apparent until late teenage years or later. People with NF-2 may only have a few café-au-lait spots--brown oval or circular spots on the skin. Skin tumors are few in number and easily overlooked.
However, everyone with NF-2 has tumors affecting hearing and balance (vestibular schwannoma or acoustic neuroma). Cataracts in the lens or changes in the retina of the eye are present in most people. Tumors, which push on the brain or spinal cord (meningiomas and schwannomas), as well as tumors along the peripheral nerves (schwannomas), or tumors within the spinal cord occur in many people. These problems are serious because they can cause weakness or seizures, but the tumors are benign.
People with NF-2 should realize that while the problems they face can be frightening, there have been important advances in both treating and detection of NF-2, which offer considerable hope.