Navigating a diagnosis of neurofibromatosis (NF) or schwannomatosis (SWN) can feel overwhelming, but you don’t have to go through it alone. NF Midwest is a community of individuals and families who understand. We’re here to provide you with clear information, hopeful resources, and a network of support.
What is Neurofibromatosis (NF)?
Neurofibromatosis, or NF, is a group of genetic conditions that causes tumors to grow on nerves throughout the body. These tumors are usually benign (non-cancerous), but they can still cause a wide range of health issues. NF includes neurofibromatosis type 1 (NF1), NF2-related schwannomatosis (NF2-SWN), and other forms of schwannomatosis (SWN).
Each type of NF is distinct, with its own set of signs and symptoms. Explore the sections below to learn more about each condition.
Neurofibromatosis Type 1 (NF1)
NF1 is the most common form of neurofibromatosis. It is typically diagnosed in childhood and is characterized by multiple café-au-lait (light brown) spots on the skin.
NF2-Related Schwannomatosis (NF2-SWN)
NF2-SWN is characterized by the growth of benign tumors on the nerves responsible for hearing and balance. This can lead to hearing loss, ringing in the ears, and balance problems.
Schwannomatosis (SWN)
SWN is a rare form of NF that causes painful tumors called schwannomas to develop on nerves. Unlike NF2-SWN, it does not typically affect the hearing and balance nerves.
Your NF Resource Library
Knowledge is a powerful tool. We’ve curated a collection of articles, guides, and other materials to help you understand and manage life with NF. Whether you’re newly diagnosed, a longtime warrior, a parent, or a caregiver, our Library is here for you.