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The Neurofibromatosis Program at the University of Chicago Medicine provides care for patients with neurofibromatosis type 1 (NF-1), neurofibromatosis type 2 (NF-2) and scwhannomatosis, a related condition. Traditionally, most clinics for NF have focused on children with NF-1. Our program is one of the few in the country that treats both adults and children and has done so for more than 20 years. In treating adults with NF-1, we are able to treat other NF-related conditions that are primarily adult diseases.
NF-related disorders are chronic conditions that require long-term management and follow-up. UChicago 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 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.
Physicians in our Neurofibromatosis Program have extensive expertise managing and treating these complex disorders and are able to provide the most advanced care to their patients. Since 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.