Neurofibromatosis Program

Neurofibromatosis Chart

 

Neurofibromatosis (NF) is a rare genetic disorder that affects the nervous system, causing tumors to develop on nerves throughout the body. It can lead to a wide range of symptoms, from benign (noncancerous) skin tumors to more severe complications that impact the brain, spinal cord and other vital organs. NF can have various forms, including NF1, NF2 and schwannomatosis – each with its unique challenges and symptoms.

Neurofibromatosis is a lifelong condition that varies in its severity and impact on individuals. It can manifest differently in each person, even within the same family. Early diagnosis, genetic counseling and ongoing medical care are essential for individuals with neurofibromatosis to manage their symptoms and maintain their overall health and well-being.

 

Comprehensive Care for All Conditions

Our Neurofibromatosis Program focuses on the specific type of NF your child faces and the best possible treatment plan to address that type.

Neurofibromatosis can cause many different types of symptoms and complications, and our specialists have the expertise to treat them. We offer treatment for: 

  • A wide variety of tumors, including optic nerve gliomas, brainstem gliomas, gliomas, astrocytomas, meningiomas and pheochromocytomas
  • Plexiform neurofibromas/neurofibromas
  • Malignant peripheral nerve sheath tumors
  • Learning disabilities, attention-deficit hyperactivity disorder (ADHD) and behavioral/social problems that result from neurofibromatosis
  • Orthopedic complications, including scoliosis, bony dysplasia, tibial bowing, sphenoid wing dysplasia and pseudoarthrosis
  • Ophthalmological complications, including Lisch nodules, optic nerve gliomas, papilledema and glaucoma
  • Vascular complications, including stroke, moyamoya disease, aneurysms, coarctation of the aorta and renal artery stenosis
  • Cardiac complications of neurofibromatosis
  • Hearing loss
  • High blood pressure
  • Headache
  • Seizures/epilepsy