Originally Posted by sparkylynne

My daughter has Neurofibromatosis type 1. It does not run in our family. She is 22 years old. She has had multiple spinal surgeries to remove tumors that were compressing her spinal cord. She also had a malignant tumor (a MPNST) removed from her sciatic nerve in her left leg. They had to remove the nerve to get the tumor. As a result, she has no feeling or function from her knee down. They feel they got all of the tumor and she is doing well. She is able to walk but has to use a walker.

NF is an awful disorder. There is no treatment or cure. The first line of treatment is surgery to remove the tumor that is causing problems. However, since the tumors are part of nerves, when you remove a tumor is severs a nerve resulting in the loss of function and/or sensation somewhere in the body. Also, when the tumors are growing, they are painful.

1:2500 people are born with NF. It is quite common but no one has heard of it since there has not been any media coverage about it. It effects everyone differently, even within the same family. You can learn more at: **

~Lynne