Am I at Risk for Developing Neurofibromatosis?

Neurofibromatosis is a benign (noncancerous) genetic disorder that is present at birth. Because of this, there are no controllable risk factors associated with this condition. Being closely related to an individual with neurofibromatosis is the only risk factor. Neurofibromatosis is relatively uncommon; an estimated one in 3,000 individuals are born with this condition.

There are three types of neurofibromatosis, each affecting a different part of the body:

• Type 1 (the most common) develops in the skin and may spread throughout the body or grow in small bunches.
• Type 2 grows in the nervous system, usually in the skull or spinal canal.
• Type 3 forms in the peripheral nerve cells throughout the body, although these tumors do not spread to other organs.

Risks associated with neurofibromatosis

While neurofibromatosis is not a cancerous condition, individuals who have neurofibromatosis may have an increased risk of developing certain types of other health conditions. For example, individuals with type 1 neurofibromatosis may have an increased risk of developing meningioma, glioma and schwannoma. Those with type 2 may be more likely to develop meningioma, as well as spinal cord ependymoma and vestibular schwannoma. Additionally, roughly 10 percent of neurofibromatosis patients develop cancerous peripheral nerve sheath tumors. If you are experiencing numbness, tingling sensations, unexplained pain, muscle weakness or dizziness, be sure to promptly consult with your physician.

Moffitt Cancer Center offers comprehensive diagnostics, treatment and disease management services to neurofibromatosis patients. If you have questions about your neurofibromatosis risk factors or would like to consult a Moffitt physician about your treatment options, we encourage you to complete a  new patient registration form online or call 1-888-663-3488. We welcome patients from around the world. at our center in Tampa and do not require referrals.