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About Neurofibromatosis

The NF-related disorders include NF-1, NF-2 and schwannomatosis, each with distinguishing symptoms. NF can be a serious and unpredictable disease, however many people with NF live a normal and productive life.


The most common form of neurofibromatosis (NF) is NF-1. It is a genetic disorder that causes tumors to form on nerves. These may occur anywhere in the body. NF is one of the most common genetic disorders. It occurs in every racial and ethnic group and affects both sexes equally. There are at least 100,000 people in the United States with NF. In a city the size of Chicago, as many as 2,300 people have NF. The symptoms and progression of NF is different for each person. Common complications are café au lait ("coffee with milk") spots on the skin, brownish-red spots in the colored part of the eye called Lisch nodules, benign skin tumors called neurofibromas, and larger benign tumors of nerves called plexiform neurofibromas. Some signs of NF-1 are usually visible within the first year of life, while other signs of NF-1 may develop as people get older. NF-1 is a progressive disorder and complications are age specific.


NF-2 is sometimes referred to as central neurofibromatosis or bilateral acoustic neuroma disease. Much like NF-1, the symptoms and progression of NF-2 is different for each person. NF-2 causes tumors along the nerves leading to the brain or spinal cord, as well as tumors of the covering of the brain and spinal cord, and tumors of the spinal cord itself. Because of this, NF-2 can cause serious disabilities. Patients may develop multiple tumors on nerves associated with swallowing, speech, eye movements and facial sensation, and on the spinal nerves going to the arms and legs. Signs of NF-2 are usually not present until people are teenagers or older. The most common symptoms of NF-2 are tinnitus (ringing in the ears), hearing loss, and loss of balance.


Schwannomatosis is a rare condition defined by the presence of multiple benign tumors of nerves that are frequently very painful. In addition to pain, weakness is a common problem. Symptoms usually begin in young or mid-adult years.

Evaluate Your Family

NF-1 and NF-2 are genetic disorders that may be passed from parent to child at the time of conception, but can also develop due to a spontaneous change in a gene. About one half of persons with NF-1 and NF-2 do not have a parent with the disorder and represent new genetic changes. However, parents with NF-1 and NF-2 can pass the disease on to their children. The risk of an affected pregnancy for a patient with NF-1 or NF-2 is 50 percent for each pregnancy. The gene that causes NF-1 is different than the one that causes NF-2. Schwannomatosis is predominantly a sporadic condition, and the risk of passing this disorder on to children is substantially less than in NF-1 and NF-2.

It is important to know whether other people in your immediate family have NF. Identifying who in a family is affected may be a sensitive and difficult issue because some people have feelings of guilt or shame associated with having a genetic disorder. However, there are good reasons for knowing who has NF. If, for example, you have NF-1 or NF-2, then any of your children can have NF. On the other hand, if your child has NF and you are sure that neither of the parents is affected, then the chance of having another child with NF is very small. Our well-informed and dedicated medical team can help families navigate this complex disease and can provide patients with information about genetic disorders, family planning, and the risk of passing on NF to their children.