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Neurofibromatosis - Type 1

Neurofibromatosis - Type 1

About neurofibromatosis type 1

Neurofibromatosis type 1 (NF1) is a genetic condition that can cause tumors to grow on nerve tissues. Most of the time, it is benign (not cancerous) and is not life threatening but it can negatively impact a child’s quality of life. Additionally, NF1 can affect many areas of the body with other issues, so it’s important to work with a care team from across multiple specialties that can manage the physical, emotional and behavioral issues that can often occur with NF.

At Children’s Hospital of Richmond VCU, we’re here to help guide your child and you on a path of healing and good health. As the state’s only NF clinic recognized by CTF’s NF Clinic Network, our specialists use a team approach to diagnosing, treating and managing neurofibromatosis type 1 (NF1) and neurofibromatosis type 2 (NF2). Learn more about our approach to empowering and helping kids with NF.

Is neurofibromatosis common in children?

Neurofibromatosis type 1 affects roughly 1 child in every 3,000 births. Typically, NF1 is diagnosed in children by the age of 10. Neurofibromatosis type 2 is not the same as NF1, despite its similar name. NF2 is usually diagnosed in teens and adults. It affects only 1 in 25,000 births.

Causes of neurofibromatosis type 1

When a child has NF1, their cells can’t make neurofibromin correctly. This affects how cells communicate with each other in one of the body’s vital pathways (called RAS-MAPK pathway). Because the neurofibromin isn’t made properly, it can’t slow down cell growth or keep cells from growing out of control.

Signs of neurofibromatosis type 1

One of the first symptoms of NF1 are café-au-lait skin spots. These typically appear before a child’s first birthday. Skin spots are darker than surrounding skin and are usually more than one-quarter inch in diameter.

Signs of NF1 may also include:

  • Developmental delays
  • Neurofibromas (bumps in and under the skin)
  • Plexiform neurofibromas (large neurofibroma deeper inside the body)
  • Frequent headaches
  • Difficulty in learning
  • Attention problems
  • Hyperactivity
  • Executive functioning difficulties
  • Shorter stature
  • Scoliosis
  • Curving, thinning or weakness in shins or forearms
  • Freckles in the armpit or groin
  • Larger than normal head
  • Eye or vision problems
  • Anxiety or other psychological issues

What can you do about neurofibromatosis type 1?

At CHoR, we are honored to work closely with children and young adults with NF1 and NF2 – from birth to age 22 –for early diagnosis and to develop a comprehensive treatment plan that helps manage symptoms, prevent complications and enables your child to live a full life.

Your child’s treatment plan will vary greatly based on their symptoms and treatment goals, but it will include input and guidance from experienced providers across many specialties, including but not limited to:

We are dedicated to treating your whole child and family – not just the NF1. 

Learn more about our approach to treating NF1