Individuals with neurofibromatosis type 2 (NF2) can now benefit from the Midwest’s only program specializing in the clinical care of children and adults with NF2—a genetic disorder that affects one in 40,000 individuals worldwide. The NF2 Clinical Program is a joint project of Barnes-Jewish Hospital, the Siteman Cancer Center and the Washington University NF Center.
Individuals with NF2 develop tumors in the cranial nervous system. Because the tumors grow slowly, they may be present for many years before causing symptoms. One of the most frustrating aspects of NF2 is its variation among individuals, even in members of the same family. In general, most individuals with NF2 experience their first symptoms —hearing loss, ringing in the ears (tinnitus) and balance problems— during the late teenage years or early 20s.
The NF2 Clinical Program is co-directed by Washington University neurosurgeon Michael Chicoine, MD, and Washington University otolaryngologist Timothy Hullar, MD. Their collective experience in treating large numbers of patients with this uncommon disease stimulated the assembly of a dedicated, multidisciplinary group of physicians and other health care professionals to coordinate patient assessment and treatment using a comprehensive approach.