Learn more about the conditions that fall under the name “neurofibromatosis”.
Neurofibromatosis (NF) is a complex, often devastating set of genetic disorders with possible complications throughout the entire body that may also hold the genetic mystery to a host of other human ailments. Affecting approximately 1 in 2,500 people or 2 million people worldwide, it appears equally in all races, ethnic groups and both sexes.
A common complication for a person with NF is the growth of tumors on the nerves anywhere in and on the body. There are currently several separate, distinct disorders classified as neurofibromatosis. This includes neurofibromatosis type 1 (NF1), neurofibromatosis type 2 (NF2), and schwannomatosis. Others are also being identified.
If you or a loved one has NF, it is vital to be armed with a strong knowledge and understanding about the disorder and to see an NF doctor who is not only knowledgeable but also very experienced in the treatment of NF.
On this website and on links that take you beyond, we hope you find some of the answers that you are looking for.
This booklet may be downloaded for FREE. It may also be mailed FREE to any NF family or individual who is new to NF Midwest and resides in the NF Midwest service region of Illinois, Wisconsin, Indiana, Kentucky, Iowa or the east half of Missouri. If you are not in these regions you may contact the NF Network.
I recently learned I have NF1 at the age of 29. Iam blown away with how fast these tumors are growing and haven't got a clue how to start, where to begin , or if I even want to know anymore [about] this . My heart is broken.... I took pride in my appearance and being a young female it's hard to explain to anyone that these are not warts or STDs. I just need help with excepting the reality of my condition, so thank you from the bottom of my heart for reminding me I'm not alone and giving information to guide me in the right direction. I can do this because you have given me the tools to get started. Other websites send me in circles leaving me with more questions then I began with. So once again THANK YOU FOR CARING.
The resources on this site should not be used as a substitute for professional medical care or advice on Neurofibromatosis. Users seeking information about a personal genetic disease, syndrome, or condition should consult with a qualified healthcare professional.