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Neurofibromatosis causes tumors to form on nerves throughout the body. At UW Health, our Comprehensive Pediatric Neurocutaneous Disorders Clinic experts diagnose and treat neurofibromatosis and other disorders.
Types and causes
Types of neurofibromatosis
Neurofibromatosis causes tumors to develop on nerve tissue. These tumors are typically benign (non-cancerous).
Neurofibromatosis is a type of disorder that affects both the nervous system (neuro) and skin (cutaneous). These conditions are called neurocutaneous disorders.
There are three types of neurofibromatosis:
Neurofibromatosis 1 (NF1)
Tumors throughout the nervous system
Neurofibromatosis 2 (NF2)
Tumors on specific nerves in the brain that affect hearing and balance
Tumors on or near the brain and spinal nerves
Other neurocutaneous disorders
Genes cause these disorders, and they are present at birth (congenital). Genetic conditions can be passed down from parents or occur with no family history. Other neurocutaneous disorders include:
Affects the nervous and immune systems. Children may have difficulty walking, have problems with balance or hand coordination, experience muscle twitches, have slurred speech or trouble moving their eyes side to side. Groups of enlarged blood vessels in the eyes and on the surface of the skin may also be a characteristic.
Can increase the risk of developing basal cell carcinoma (BCC) skin cancers and non-cancerous tumors. Symptoms may include benign cysts in the jawbone, or small depressions in the palms of the hand or soles of the feet.
Growth of numerous noncancerous tumors throughout the body. These tumors may occur in the skin, brain, kidneys and other organs. Some tumors may cause neurological disorders including hyperactivity, aggression, intellectual disability, autism, psychiatric conditions or seizures.
Von Hippel-Lindau disease
Results in the formation of tumors or cysts in different parts of the body. They may be cancerous or non-cancerous and normally appear during young adulthood. Growths are made of newly formed blood vessels and may cause vision loss, headaches, vomiting, weakness or loss of muscle coordination.
Symptoms and diagnosis
Signs and symptoms of each type of neurofibromatosis
Each type of neurofibromatosis has different signs and symptoms. These signs can develop throughout childhood. Most symptoms of neurofibromatosis are mild. Symptoms become more severe when tumors affect specific nerves or organs.
Neurofibromatosis 1 (NF1)
NF1 is the most common type of neurofibromatosis. Signs of NF1 usually appear after birth or during early childhood. NF1 symptoms include:
Bone deformities (curved spine or bowed leg)
Bumps in and under the skin (neurofibromas)
Freckling in the armpits or groin
Larger-than-average head size
Skin spots (often called café-au-lait spots)
Tiny bumps on the eye
Neurofibromatosis 2 (NF2)
NF2 is less common than NF1. Signs of NF2 usually appear in teens and young adults. NF2 symptoms include:
Ringing in the ears
Schwannomatosis is a rare form of neurofibromatosis. Signs of schwannomatosis typically develop after age 20. Symptoms include:
Numbness or weakness
Doctors typically diagnose this condition after symptoms develop. If your child is born with signs of neurofibromatosis, or it runs in your family, our doctors may suggest genetic testing.
When symptoms develop at later ages, our doctor may use several tests to make a diagnosis. These include:
X-rays or MRI tests
Treatments and research
Helping children live full lives
There is no cure for neurofibromatosis or other neurocutaneous disorders. Treatment can manage early complications and help your child live a full life.
At UW Health, we address the physical, emotional and social needs of children with tumors affecting their nervous system. Our treatments and therapies include:
Behavioral health care
Movement therapies (physical and occupational)
Surgery (for tumor removal or bone problems)
Our team is also committed to learning more about this condition and how best to treat it. We conduct clinical trials of new medications and therapies.
Meet our team
Many experts caring for your child
Our Comprehensive Pediatric Neurocutaneous Disorders Clinic includes experts in cancer, dermatology, genetics, neurology, neuropsychology, neurosurgery and rehabilitation.
Facing neurofibromatosis head on
Emma was born with neurofibromatosis 1. By the time she was 7, she had undergone 13 surgeries. Despite it all, Emma is thriving.
A comprehensive clinic, close to home
We offer care for neurofibromatosis and other neurocutaneous disorders at our clinic in Madison.
Pediatric cancer services
With our expertise comes compassion. Our team considers you and your child part of our family. We will be by your side every step of the way. From diagnosis through treatment and into adulthood, we will care for your child as if they are our own.Learn more