Neurofibromatosis Program

Neurofibromatosis Type 1

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Dr. Robert Listernick with patient Molly, 4 years old. (Photo credit: Amy Boyle Photography)

Neurofibromatosis type 1 (NF1) is a relatively common genetic disorder that affects about 1 out of every 3,000 people. An individual may be the first person in their family to have NF1, while others have a parent with NF1. It affects many organ systems in the body, including the bones, the skin, the eyes and the brain. An early sign of the condition can be the presence of many birthmarks called café-au-lait spots. It is important to note that individuals without NF1 can have these birthmarks as well. Any child with more than 6 of these birthmarks should have an evaluation with an NF1 expert to determine if these birthmarks may be a sign of the condition.

People with NF1 typically develop some number of benign (non-cancerous) tumors or growths called neurofibromas. Neurofibromas can grow anywhere in the body where there are nerves, but are often seen just under or on top of the skin.  About half of the children with NF1 will also have some difficulties with learning and attention. All individuals with NF1 should have an evaluation with an NF1 expert at least once per year.

Neurofibromatosis Type 2

Neurofibromatosis type 2 (NF2) is a rare genetic disorder that affects about 1 out of every 25,000 people. An individual may be the first person in their family to have NF2, while others have a parent with NF2. NF2 causes tumors to grow on the auditory vestibular nerves, which are the nerves that help people to hear. These tumors can result in hearing loss and balance problems. People with NF2 are also at an increased risk to develop benign (non-cancerous) tumors in other parts of the body, such as the brain, spinal cord and peripheral nerves (nerves in the arms and legs). All individuals with NF2 should have an evaluation with an NF2 expert at least once per year.

The Lurie Children's Difference

At the core of our unique approach to pediatric care is our experienced, multidisciplinary teams. We work closely with a pediatric ophthalmologist for diagnosis and monitoring of optic pathway tumors. We also work with pediatric orthopaedic surgeons, neurosurgeons, endocrinologists and oncologists. Although most tumors in NF patients are benign, they are treated by an oncologist.

The team sees more than 300 patients with neurofibromatosis each year. We provide comprehensive care from the first clinic visit through the transition to adult care.

Multidisciplinary Team: Specialists in: 
Endocrinology  Glands and hormones
Genetics Genetic conditions
Neurosurgery  Surgery of the brain, spinal cord and nerves
Oncology Tumors and cancers
Ophthalmology Vision 
Orthopaedic surgeon Surgery of the bones

 

Services

  • Care coordination
  • Diagnostic evaluation
  • Ophthalmologic evaluation
  • Genetic counseling
  • Genetic testing
  • Medical imaging
  • Referrals
  • Social work
  • School and educational resources
  • Transition to adult care
  • Access to clinical trials and research opportunities
  • Support group connections

Specialists

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From left: Katherine H. Kim, MS, CGC; Robert Listernick, MD; Joel Charrow, MD; Janice Lasky-Zeid, MD; Allison Goetsch, MS, CGC

Make an Appointment

The neurofibromatosis clinic is held the first three Thursdays of each month at our outpatient center in Lincoln Park:

467 West Deming Place
Suite 900
Chicago, IL 60614

Neurofibromatosis clinic appointments typically take 2-3 hours. They include evaluations with genetics and ophthalmology with a dilated eye-exam.

To schedule a first-time or return appointment in the Neurofibromatosis Clinic, please contact the Division of Genetics directly:

Phone: 312.227.6120

Note: Urgent appointments are available most Mondays and Fridays. Please call the Division of Genetics to speak with an NF provider if your child needs an urgent evaluation.

Questions

For more information, please contact program coordinator Allison Goetsch at 312.227.6769

Conditions We Treat