The Indiana University Neurofibromatosis Clinic is based at Riley Hospital for Children at IU Health. It is the only clinic for comprehensive care of those with neurofibromatosis in the state of Indiana.
IU School of Medicine scientists have been leaders in researching the molecular basis of neurofibromatosis and developing new treatment options based on the work. For example, IU investigators discovered that the anti-cancer drug Gleevec could be used as a therapy in neurofibromatosis type 1, making it the first effective treatment for the tumors affecting many NF1 patients.
The Center provides diagnosis, genetic counseling and management for patients of all ages with neurofibromatosis (NF). Patients with NF type 1, NF type 2 and schwannomatosis receive care:
- Neurofibromatosis Type 1 (NF1) is a common genetic disorder that affects 1 in 3000 people. NF1 affects several body systems including the skin, nerves, blood vessels and bone. The most common findings are benign skin tumors or neurofibromas. Although these tumors are not malignant, they can be bothersome because of their appearance and because they can become uncomfortable and even painful.
- Neurofibromatosis Type 2 (NF2) is less common than NF1 and affects 1 in 40,000 people. The most common problem in NF2 is benign (non-cancerous) tumors on both nerves that go from the brain to the ear (acoustic neuromas or vestibular schwannomas). These tumors can cause ringing in the ears, balance difficulties and hearing loss.
- Schwannomatosis is a form of neurofibromatosis that is not well understood. Patients with schwannomatosis have benign (non-cancerous) tumors called schwannomas that form on many nerves in the body. Many people with schwannomatosis also have very severe pain.
More detailed information about neurofibromatosis can be found at the Children's Tumor Foundation.
The clinic also provides referrals to specialists, including dermatologists, neurosurgeons, oncologists, ophthalmologists, orthopedic surgeons, otolaryngologists and plastic surgeons who work closely with the NF clinic.
The clinic, recognized by Neurofibromatosis Inc. and an affiliate clinic in the Children's Tumor Foundation Clinic Network, cares for more than 200 patients each year. One of the strengths of the clinic is providing a smooth transition from childhood care to the care of adolescents and adults with the physicians in our clinic.