Neurofibromatosis and neurocutaneous disorders: Helping your child live their best life

Expert care for neurocutaneous disorders for children, adolescents and young adults.

Overview

Understanding neurofibromatosis

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.

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.

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

  • Hearing therapy

  • Medication

  • Movement therapies (physical and occupational)

  • Speech therapy

  • Surgery (for tumor removal or bone problems)

  • Visions treatment

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.

Patient stories

Facing neurofibromatosis head on

Unstoppable Emma

Emma was born with neurofibromatosis 1. By the time she was 7, she had undergone 13 surgeries. Despite it all, Emma is thriving.

Locations

A comprehensive clinic, close to home

We offer care for neurofibromatosis and other neurocutaneous disorders at our clinic in Madison.