There is no cure or treatment for NF1. Some tumors may be removed, but others, such as plexiforms may be difficult to manage and may only be “debulked”. Optic gliomas may be treated with chemotherapy, though it is only warranted if they progress and cause complications such as vision changes. Bony abnormalities may be treated surgically or through instrumentation.

It is EXTREMELY CRITICAL that people with NF1 are treated by physicians that have a lot of experience in the disorder, especially if there are ANY complications. If you cannot get to an “NF Specialist”, please contact us for other options.