Neurofibromatosis is a genetic condition that makes people more likely to develop tumors, primarily involving the brain, spinal cord, and peripheral nerves. While many of these tumors are noncancerous, some cause significant disability and some are life threatening.
Because neurofibromatosis affects the entire body, the condition is best treated by a multidisciplinary team of specialists. At Memorial Sloan Kettering, our Neurofibromatosis Clinic consists of neurologists, medical oncologists, ophthalmologists, neurosurgeons, surgical oncologists, and pain management physicians, all committed to providing state-of-the-art care for the tumors caused by these diseases.
Types of Neurofibromatosis
There are three types of neurofibromatosis: neurofibromatosis type 1, neurofibromatosis type 2, and schwannomatosis. Each type has a unique genetic cause and lead to the formation of different tumors types. All three conditions can be inherited, but can also occur in individuals without a family history.
Some neurofibromatosis patients develop a large number of tumors, while others do not. The number and type of tumors that develop will depend on which type of neurofibromatosis you have as well as the genetic characteristics of your disease. If it is unclear which group you fall into, genetic testing may be able to help. Learn more about genetic testing and counseling at Memorial Sloan Kettering.
NF1 is one of the most common genetic conditions, affecting 1 in 3,000 people. People with NF1 have a predisposition for developing the following types of tumors:
Neurofibromas of the skin (cutaneous neurofibromas)
NF2 is less common than NF1, and is associated with a different spectrum of tumors, including:
Like NF2, schwannomatosis is a rare condition that predisposes individuals to schwannomas, a type of nerve sheath tumor that can be painful. Unlike NF2, it rarely causes meningiomas.
All types of neurofibromatosis can cause pain and neurologic problems, as well as life-threatening complications. At MSK, neurofibromatosis care is a team effort, bringing together neurologists, oncologists, neurosurgeons, radiation oncologists, and radiologists who work closely together and confer on a regular basis.
In most cases, we will monitor the tumors using the most advanced imaging technology available while managing symptoms. In some instances, surgery is an important part of care. MSK surgeons routinely manage complex cases involving the brain, spinal cord, peripheral nerves, and the rest of the body. Our clinic provides immediate access to these experts.
For people with certain types of tumors, we may be able to identify molecular targets using a genome-sequencing test developed at MSK known as MSK-IMPACT. Several clinical trials at MSK are enrolling patients on an ongoing basis using molecular information identified by this test.
The clinic is further supported by various research programs at Memorial Sloan Kettering. At our Brain Tumor Center, director Luis Parada is developing novel drugs for the treatment of gliomas, neurofibromas, and malignant peripheral nerve sheath tumors. Ping Chi, of the Human Oncology and Pathogenesis Program, is studying the genetic and epigenetic changes that lead to the formation of these tumors. Translating their discoveries to patient treatment is an objective of the Neurofibromatosis Clinic.
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