Living with Neurofibromatosis, type 2
A genetic condition with non-cancerous tumors in the nervous system, especially on the nerves of the inner ear, with hearing loss.
Understanding Neurofibromatosis, type 2
The most common tumors are vestibular schwannomas, which grow along the nerve from the inner ear to the brain. Meningiomas, which form on the covering of the brain and spinal cord, are also common. Symptoms usually start in the teens or early twenties. Early signs include hearing loss, ringing in the ears, and balance problems. Cataracts can occur, often starting in childhood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Hearing loss
- Tumors on the hearing and balance nerves
- Meningiomas
- Spinal cord tumors
- Cataracts
- Reduced clarity of vision
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists, cancer specialists, ear, nose, and throat specialists and eye disease specialists.
- 3Consider genetic testing
Changes in NF2 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Acoustic Neuroma Association, Children's Tumor Foundation and Neurofibromatosis Midwest may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Cancer specialists (oncologists); Ear, nose, and throat specialists (otolaryngologists); Eye disease specialists (ophthalmologists)
- Expert care
- Expert lists: Acoustic Neuroma Association, Children's Tumor Foundation, Neurofibromatosis Midwest
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Acoustic Neuroma Association and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD lists changes in the NF2 gene. The condition is autosomal dominant, which means one changed copy of the gene can be enough to cause it.
Also known as: banf - bilateral acoustic neurofibromatosis; bilateral acoustic neurofibromatosis; familial acoustic neuroma; familial vestibular schwannoma; full neurofibromatosis type 2; full nf2
Patient organizations
- Acoustic Neuroma AssociationNeurofibromatosis, type 2 · United States
- Children's Tumor FoundationNeurofibromatosis, type 2 · United States
- Neurofibromatosis MidwestNeurofibromatosis, type 2 · United States
- Neurofibromatosis NetworkNeurofibromatosis, type 2 · United States
- Neurofibromatosis NortheastNeurofibromatosis, type 2 · United States
- NF CollectiveNeurofibromatosis, type 2 · United States
- NF2 BioSolutionsNeurofibromatosis, type 2 · United States
- Littlest Tumor FoundationNeurofibromatosis, type 2 · United States
You are more than your diagnosis
Perspectives from people navigating life with Neurofibromatosis, type 2.
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