Neurofibromatosis

Overview

Mayo Clinic specialists are recognized internationally as experts in diagnosing and treating tumors of the nervous system, including neurofibromatosis. They care for about 3,000 patients who have neurofibromatosis each year.

Specialists in neurology, neurosurgery, medical genetics, orthopedics, dermatology, otorhinolaryngology, audiology, developmental pediatrics, plastic surgery, radiology and ophthalmology work together to address the multiple complications and complex management challenges that can accompany this condition. These experienced professionals use state-of-the-art equipment and are at the forefront in research and testing of promising new therapies. The multidisciplinary Neurofibromatosis Clinic at Mayo Clinic in Minnesota offers comprehensive diagnosis, treatment and support for patients with neurofibromatosis and their families.

Fortunately, the future for those with neurofibromatosis looks much brighter than it did even a few years ago. Surgical techniques have improved, and early detection of complications has led to more successful management of the disease. The discovery of the genes that cause each type of this condition has led to better diagnosis and screening of other family members and sparked hope for gene therapies which could cure or prevent neurofibromatosis.

Learn more about treatment of

• neurofibromatosis type 1.
• neurofibromatosis type 2.

Types of Neurofibromatosis

Neurofibromatosis has two distinct types — type 1 (NF1) and type 2 (NF2).

NF1 is more common, occurring in one of every 4,000 births.It affects an estimated 100,000 people in the United States. It is also known as von Recklinghausen disease. It is long lasting (chronic) and mostly affects nerves of the outer parts of the body (peripheral nervous system).

The second type, NF2 (also known as bilateral acoustic neurofibromatosis) is rarer, appearing in one in 30,000 to 40,000 births. People with NF2 usually develop tumors on the nerves in their ears, causing hearing loss, eventual deafness and problems with balance. NF2 may also involve tumors along the spinal cord.