Neurofibromatosis (Adult)

Neurofibromatosis is a genetic disorder of the nervous system. It causes benign tumors called neurofibromas to slowly grow on nerves anywhere in the body – brain, spinal cord, and large and small nerves. It’s typically diagnosed in childhood or early adulthood.

You can inherit Neurofibromatosis from your parents or through a mutation in your genes at conception. Once you have it, you have a 50 percent chance of passing it along to each of your children.

Evaluation and Treatments

At UT Southwestern Medical Center, our physicians provide lifelong care for Neurofibromatosis (NF) patients. Our Comprehensive Neurofibromatosis Clinic, in conjunction with the NF Clinic at Children’s Medical Center Dallas, offers expert diagnosis and treatment for each type of NF from childhood through adulthood.

We have the state-of-the-art technology, cancer screening services, and subspecialists with the experience and background to meet the individual needs of NF patients.

Types of Neurofibromatosis

Type 1 (NF1)
The most common type; causes skin changes, deformed bones, and usually starts at birth

Symptoms include:

  • Bone deformities, such as scoliosis or a bowed leg
  • Freckles in the armpits or groin
  • Harmless flat, brown spots on the skin, called cafe au lait spots; usually present at birth or appear during first year of life, possibly increasing in number over time; more than six possibly indicative of NF1
  • Larger than average head size
  • Learning disabilities, but usually mild; often of a very specific type, such as problems with visual-spatial skills or attention-deficit hyperactivity disorder
  • Short stature
  • Soft bumps on or under the skin
  • Tiny bumps on the iris of the eye, which a physician can detect with special equipment
Type 2 (NF2) 
Much less common, causing hearing loss, ringing in the ears, and balance problems; can also lead to cataracts or numbness or weakness in the arms or legs; often starts in the late teen or early adult years
Schwannomatosis 
The rarest type, which causes intense, chronic pain in any part of the body, generally affecting people in their 20s and 30s; possible development of tumors in the cranial, spinal, and peripheral nerves, but not affecting the nerve that controls hearing and balance

The NF Clinic at UT Southwestern treats patients with all three types of NF. Although these share the name of Neurofibromatosis, they are unique disorders with different symptoms and presentations. There is no proven cure for NF, and clinical follow-up is critical.

Our Specialists

UT Southwestern is a leader in research of genetics and hereditary diseases. We’re committed to providing and developing new treatments for NF patients at each stage of their lives and disease. Our multidisciplinary team approach provides consistent care for NF patients throughout their lifetimes.