Lexi
I DO sympathize with you, my husband also has NF1 We found out by accident. He had these tumors on his outer upper thigh that were raised. Of all the doctors we have been to, it took a dermatologist to tell us what it was. He did have surgery to remove it, but it grew back even worse, so we just left it alone. Also it is a hereditary disease. Come to find out, his father and his paternal grandmother suffers from it and did nothing about it. Only one of my husband's sister has it but she does not have the raised tumors. Only the Cafe-au-lait spots on her torso. I have been to this site and it kind of helps alieve some of the anxieties I have been going thru. Hopefully you will go there and look around, there are some very useful info. Here is the site: http://www.nf.org/ Good Luck!!