Be iNFormed. Find material and educational opportunities.
Because it is so complex, it is vitally important for people with NF and their families to learn and understand as much as possible about neurofibromatosis.
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.