Neurocutaneous Disorder - Neurofibromatosis

What are the treatments for the disease?

Treatment for NF is focused on controlling symptoms for the most part. Surgery may be used to help some NF1 bone malformations or to remove tumors that are painful or bothersome. But there is a chance that tumors will grow back and in greater numbers. NF1 tumors become malignant or cancerous in only about 3 to 5 percent of cases. When they do, surgery, chemotherapy, or radiation may be used.

For NF2, surgery is sometimes used, but the doctor and patient will need to weigh the risks, such as hearing loss against the benefits. Radiation may be used in some cases.

What are the side effects of the treatments?

Side effects of treatments depend on the treatment used. Radiation and chemotherapy always carry some risks.

What happens after treatment for the disease?

Treatment of NF lasts a lifetime. Although NF cannot be cured, it can often be controlled with careful management and treatment. Any complications that do occur must be treated promptly.

How is the disease monitored?

All people with NF should be followed by a doctor at least once a year. Referral to a specialist for any vision or hearing problems should also be made. Children with NF should always have a yearly exam by an ophthalmologist. Blood pressure should also be monitored for any elevation above a healthy range. Any new or worsening symptoms should always be reported to the doctor.