There is currently no cure for NF1, but the condition can be managed.³ Treatment involves regular monitoring and treatment of symptoms.³

Treatment may involve:³

Surgery may not be needed for plexiform neurofibromas (PN) if the growths on or under the skin are small or unobtrusive.⁴ But if they’re painful or causing emotional distress, your doctor may discuss this option with you.⁴ Small PN can be completely removed, although they may grow back and require further surgery.^5,6 Surgery to reduce the size of large PN may also help reduce pain or improve mobility or appearance.⁶

However, if PN start to grow, they can become more challenging to remove with surgery.⁴ That’s because PN are groups of cells that spread into and intertwine with nearby tissue, including muscle, blood vessels and important bone structures.^1,4,6 As PN are made up of nerve fibres, nerve damage can occur during surgery, and can lead to complications such as loss of sensation or inability to move a part of the body.⁴

Some PN are considered especially difficult to remove completely if they:^1,6

• Have become highly intertwined with important nerves, muscles, blood vessels or are near vital organs
• Develop in areas that are difficult to operate on, like the head and neck
• Are full of blood vessels, which could cause excessive bleeding during surgery