Support for Neurofibromatosis

A wide variety of support services for adults and children who have neurofibromatosis and their families are available through the Comprehensive Neurofibromatosis Center and from other specialists at Hassenfeld Children’s Hospital at NYU Langone. Child and family support services and resilience programs are provided by Sala Institute for Child and Family Centered Care.

Coordination of Care

A dedicated, full-time nurse coordinator and family nurse practitioner are assigned to help people with neurofibromatosis and their families find the medical, surgical, and supportive services they need at NYU Langone. These nurses and their supervising physicians are available to assist you and your family as any needs or questions arise during treatment.

Supportive Care

NYU Langone’s supportive care team is available to provide relief from any discomfort or pain associated with neurofibromatosis or its treatments. Side effect management may include additional medications, integrative therapies, or both. For example, painful schwannomas are typically managed with a combination of medicines and nonmedicinal treatments.

Our integrative health services feature massage therapy, which can help to reduce stress, and acupuncture, which may relieve fatigue. Our yoga program can help to encourage relaxation, improve strength, and create peace of mind.

Psychological and Social Work Support

Patient and family support groups and individual counseling are provided by teams of nurses, behavioral therapists, and social workers. Support groups and one-on-one counseling sessions with adult or pediatric neuropsychologists are also available.

Counseling can often help to manage any stress or anxiety adults or children and their families may be experiencing with a diagnosis of neurofibromatosis. Psychological support programs are also available to people who are dealing with hearing loss.

Our social workers and financial counselors are available to help people cope with financial, social, and physical challenges.

Educational Support

Educational resources are available at NYU Langone to help children with neurofibromatosis, under the guidance of a librarian and New York State–certified teacher.

Learning specialists at the Child Study Center, part of Hassenfeld Children’s Hospital, offer ongoing support to ensure that a child with neurofibromatosis receives the services he or she needs, both in and outside the classroom.

NYU Langone experts may use information from diagnostic tests and classroom observation to assist your child’s teachers and school officials in developing an individualized education program (IEP). An IEP is a personalized, comprehensive plan created for students who receive special education services in public schools.

After your child’s IEP has been in place for several months and your child is engaged in therapy, experts at NYU Langone monitor your child’s progress on a regular basis.

Experts at NYU Langone partner with families, educators, and therapists to ensure that your child receives the services he or she needs. Our doctors can advocate on your child’s behalf at educational meetings and in the classroom and can work with other physicians if your child is being treated for a condition such as attention deficit hyperactivity disorder.

Physical and Occupational Therapy

Doctors at Rusk Rehabilitation may prescribe physical and occupational therapy. People with neurofibromatosis often require assistance for problems with walking, balance, coordination, and weakness. Short-term therapy can be provided at NYU Langone, and our physicians can help arrange long-term therapy closer to your home, if necessary.

In addition, Rusk Rehabilitation doctors can prescribe therapy for people who may need help returning to the activities of daily living, such as dressing, preparing a meal, balancing a checkbook, or going to school, as a result of any physical or cognitive problems.

Speech and Swallowing Therapy

Schwannomas and neurofibromas can affect the nerves that control speech and swallowing. Speech and swallowing therapists at Rusk Rehabilitation, in conjunction with ear, nose, and throat surgeons at NYU Langone, offer comprehensive evaluations and surgical and rehabilitative strategies to restore function.

Auditory Rehabilitation

The Cochlear Implant Center at NYU Langone has a team of medical specialists and therapists who work together to enhance hearing after surgical procedures for a cochlear implant or auditory brainstem implants. Audiologists and other therapists can help people to maximize the use of these devices.

All hearing-impaired people have the opportunity to communicate with their medical care team at NYU Langone with the assistance of signing facilitators or computer-assisted communication devices.

Music Therapy

Therapists use music in a medical setting to address a child’s physical, emotional, cognitive—meaning the ability to process information—and social needs. Music can be an effective tool for helping people talk about their thoughts and feelings.

Because every person with neurofibromatosis is different, music therapists create individualized music sessions that fit the specific person’s needs. Sessions may include song writing, lyric discussion, musical imagery, and music performance.

Nutrition

Our specialists recognize the important role that nutrition plays in the care of people with neurofibromatosis. Sometimes treatments cause a loss of appetite, taste changes, or nausea, making eating a challenge. Our nutritionists can provide support to children and their families to make healthy food choices during treatment and afterward.