Neurocutaneous disorders are a broad group of genetic conditions that result in disorders of the brain, spine, nervous system and/or skin.
We group neurocutaneous disorders into a single category because they all affect the nervous system. However, we see patients with symptoms and conditions that affect other parts of the body, too, from cataracts in the eyes to skeletal deformities and hearing loss.
Symptoms can range in severity and appear at any age. The tumors caused are not always cancer, but can become cancerous.
Neurofibromatosis 1 (NF1): The most common neurofibromatosis, it affects the nerves outside the brain and spinal cord, called peripheral nerves.
Neurofibromatosis 2 (NF2): These rare tumors tend to arise in the central nervous system, specifically on the eighth cranial nerve, which affects hearing and balance.
Tuberous sclerosis: UVA has received special recognition from the Tuberous Sclerosis Alliance for our care for this condition that causes benign tumors to grow in your organs, mainly the brain, eyes, heart, kidney, skin and lungs.
Von Hippel-Lindau Disease (VHL): UVA is a Comprehensive Clinical Care Center for this rare genetic disorder that creates tumors from blood vessels.
Concierge for Patients
Neurocutaneous disorders can be complex and frightening. So we provide you with a centralized contact, or concierge service to help simplify your care and treatment. We can also help you find relevant clinical trials that lead to discoveries that advance our ability to treat you and others.
Neurocutaneous disorders are genetic. At UVA, we care for you and your family through a holistic approach that not only cares for your symptoms, but provides education and guidance to your family as well. An important part of this effort involves working closely with genetic specialists at the Children's Hospital.