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Neurofibromatosis-1

• Overview
• Symptoms
• Treatment
• Prevention

Alternative Names:

NF1; Von Recklinghausen neurofibromatosis

Treatment:

There is no specific treatment for neurofibromatosis. Tumors that cause pain or loss of function are removed on an individual basis. Tumors that have grown rapidly should be removed promptly as they may become malignant. Experimental treatments for severe tumors are under investigation.

Special schooling for those with learning disorders and/or attention-deficit disorder may be required in some cases. Annual eye exams are strongly recommended.

Support Groups:

For more information and resources, contact the National Neurofibromatosis Foundation .

Expectations (prognosis):

The life expectancy of people with neurofibromatosis is almost normal, barring complications. Although mental impairment is generally mild, NF1 is a known cause of attention deficit hyperactivity disorder in a minority of patients.

With appropriate education and job expectations, people with neurofibromatosis can live a normal life. Some individuals manifest hundreds of tumors on their skin and are subject to stigmatization by society because of the way they look.

Patients with neurofibromatosis have an increased chance of developing severe tumors which, rarely, can shorten life span.

Complications:

• Blindness caused by a tumor in an optic nerve ( optic glioma )
• Malignant transformation of tumors (in approximately 5-10% of affected individuals)
• Chance of pheochromocytoma , which causes very high blood pressure
• Loss of nerve function in nerves where a neurofibroma's growth has caused prolonged pressure on the nerve
• Attention deficit hyperactivity disorder (ADHD)
• Cosmetically significant tumors of the face, skin, and other exposed areas
• Bowing or breakage of the leg bones with poor healing
• Scoliosis or curvature of the spine

Calling your health care provider:

Call your health care provider if you notice coffee-with-milk colored spots on your child's skin or any of the signs listed here. Also call if you have a family history of neurofibromatosis and are planning to have children, or would like to have your child examined.

• Review Date: 8/11/2006
• Reviewed By: Brian Kirmse, MD, Mount Sinai School of Medicine, Department of Human Genetics, New York, NY. Review provided by VeriMed Healthcare Network.

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