doctor showing image of brain

Understanding Neurofibromatosis

Spread the love

Neurofibromatosis is a genetic disorder that causes tumors to form in the nervous system. The disease has been classified as neurofibromatosis type 1 (NF1), neurofibromatosis type 2 (NF2), and schwannomatosis. Some foundations assist and help to encourage people diagnosed with NF to live a normal life. These foundations offer different programs to those who are affected with the disease to feel more freedom despite having an illness.

Neurofibromatosis Leadership Program

Aside from the effects that a patient with NF experiences, young adults who have it also experience the common challenges that all teenagers have to go through. The Neurofibromatosis Leadership program gives young adults affected with NF the chance to speak about their NF journey and to learn more effective advocacy skills. The program aims to train future leaders and new voices to the advocacy. It allows them to get involved in letting people understand the NF community even more.

Neurofibromatosis Family Wellness Retreat

The NF Family Wellness Retreat aims to connect different families that are affected by neurofibromatosis. The mission of this program is to strengthen families and to address various NF related questions and misconceptions. The program can also help other members of the family to understand NF more and to have more compassion for their family members who have the disorder.

Aside from joining an NF community and participating in the programs that they offer, it is also important for people surrounding someone with NF to learn and understand more about the disorder. Here are a few facts that they need to know about NF.



It is estimated that around 100,000 Americans have NF disorder, and it affects both sexes and all races. In NF1, the most common nerve-related tumors are neurofibromas or tumors of the peripheral nerves, while for NF2 and schwannomatosis, schwannomas are the most common. Although most of these tumors are benign, in some cases, they may be cancerous. It is still unknown why these tumors form, but it is somehow related to the mutation in genes that slow down the growth of cells in the nervous system. The mutation does not allow the genes from functioning normally, thus, allowing the cells to multiply rapidly and form tumors.


The most common symptoms of NF are lisch nodules, cafe au lait spots, freckling in the armpit or groin area, and neurofibromas are noticeable once the child is born or may be more evident eventually. However, since most of the symptoms of the disorder are age-dependent, the right diagnosis may only be given once the child ages a little more.

Is there an available prenatal test to determine NF?

Genetic testing is available to determine the presence of a tumor in the NF1 gene, and while genetic testing is also available in NF2 mutation, the accuracy rate is only at 65%. However, prenatal or genetic testing still does not exist for schwannomatosis.

Being diagnosed with neurofibromatosis is difficult; that is why it is important to be more aware and informed about the illness. Some organizations specialize in NF research who aim to find a cure for this illness, and while a cure has not been developed yet, the important thing to do is to raise awareness about NF. This can create a big impact and make a difference in the NF community and is vital for patients and their families.

Scroll to Top