fillurheartwithglee

That would be a urinary tract infection, kidney infection, idiocy, or just plain working in the medical field, not NF.

Source: I work in the medical field.

What is the biggest misconception about you?

Hey, thanks for doing an AMA. NF runs in my family. My uncle had a 75 pound tumor that almost killed him when it tore away on the inside. My cousin has a tumor on her spine that they refuse to operate on because it'll paralyze her (but it will eventually). Her children have also been diagnosed, her oldest has a tumor on her heart they they won't remove as well. She lives in Northern Michigan, and the town where she lives has many people who have NF. Just an odd coincidence.

I have noticed through your pictures that your surgeries are mostly from the shoulders up. Do you have any tumors that are non surgical?

I've been checked a lot. I have a couple of cafeole (spellcheck?) spots, but nothing to be worried about. My uncle was the first in the family to be diagnosed, and his daughter was the second. Out of his 4 daughters, 3 have it, and out of his 6 grandchildren, 4 have it. So it looks like it's only from his genes maybe.

My uncle has trouble teaching people that NF is not Elephant man's disease. Have you ran into that problem at all?