Neurofibromatosis
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What Is Neurofibromatosis?
Neurofibromatosis, also known as von Reklinghausen disease, is a genetically inherited disorder in which the nerve tissue grows benign tumors, called neurofibromas. The tumors may cause bumps under the skin, colored spots, skeletal problems, pressure on spinal nerve roots, and other neurological problems.
UR Medicine's Treatments for Neurofibromatosis
UR Medicine's Neurofibromatosis Program offers comprehensive care for children and adults with Neurofibromatosis 1 and 2, including Schwannomatosis.
Our Brain and Spinal Tumor program creates and develops the most innovative and promising treatment strategies for patients with brain and spinal tumors. We offer state-of-the-art treatment, including Translational Brain Mapping.
Our philosophy is to involve all experts with experience in the care of brain and spinal tumors from the very beginning. This means that you or your child may see a neurosurgeon, a pediatric oncologist, and a radiation oncologist.
Although there is no cure for neurofibromatosis, your provider will offer treatment options to manage symptoms. Treatment may include:
- Medication
- Surgery
- Chemotherapy
- Radiation therapy
These are genetic disorders where care for entire families is important. UR Medicine will provide a care team that is present throughout the patient's life. You will have access to expert providers familiar with these diseases and recommendations for management of complications.
What Sets Us Apart?
The Brain and Spinal Tumor Program within Wilmot Cancer Institute is a multidisciplinary clinic where neurosurgery, neuro-oncology, and radiation oncology experts provide specialized and individualized care. We also rely on support from our nurses, pharmacists, social workers and physical therapists to ensure that the patient and their family is always the focus of our care. We have the most active clinical research program in neuro-oncology in Upstate New York with clinical trials available for a wide variety of diseases. We have a Certified Genetic Counselor, Kelly Minks, M.S. on staff.
UR Medicine Neurology is a recognized leader for developing superior clinicians and scientists and has developed a national reputation for excellence in residency training in adult and child neurology and numerous subspecialties. The department is rich with dedicated faculty, an outstanding blend of academic and clinical training, exposure to nationally recognized specialists and a supportive environment provide residents with the opportunity to truly excel in their fields.