Adult Neurofibromatosis

The Neurofibromatosis Program at the University of Chicago provides care for patients with neurofibromatosis type 1 (NF-1) and neurofibromatosis type 2 (NF-2) as well as scwhannomatosis. Traditionally, most clinics for NF have focused on children with NF-1. Our program is one of the few programs in the country that treats both adults and children and has done so for more than 20 years. The inclusion of adults with NF-1 has enabled us to easily incorporate the other NF related conditions, NF-2 and schwannomatosis, which are both primarily adult diseases.

NF-related disorders are chronic disorders that require long-term management and follow-up, and the University of Chicago Medicine is uniquely able to provide continuity of care as patients progress into adulthood.

Adults with NF-1 have concerns that differ from those in children, including changes in physical appearance, complications associated with the continual development of tumors, including an increased risk for malignant (cancerous) tumors, chronic pain, and family planning. NF-2 is a very different disorder causing multiple central nervous system tumors in the brain and spinal cord. Hearing loss, as well as neurological impairment and seizures occur in most patients. Treatment for this disorder is changing and what was once exclusively a surgically treated disorder, now has the potential to be treated with chemotherapy. Schwannomatosis is a condition that is defined by the presence of multiple benign, but painful tumors of the nerves. The same multidisciplinary team that treats the complications of NF-1 and NF-2 is well qualified to provide support for patients with schwannomatosis.

Comprehensive, Expert Care

The physicians in the Neurofibromatosis Program have extensive expertise in managing and treating these complex disorders and are able to provide the most advanced care to their patients. Because NF-related disorders may affect the nerves, spinal cord, brain, skin, and other systems throughout the body, specialists in neurology, neurosurgery, medical genetics, orthopaedics, dermatology, oncology, plastic surgery, psychology, psychiatry, radiology, otolaryngology, audiology, and ophthalmology work together to ensure patients receive comprehensive care.