2 Recommendations
I have had NF1 since I was born. At first it started out with some here and there, but now I have a gazillion everywhere. YOu cant really tell I have it unless im wearing shorts or a dress because they are on my arms,legs, and body. NOw that Im getting into my teen years, the spots arent just spots,they are becoming skin nodules.
I go to Shriners here in the erie pa area. In april I had a tumor removed from my ankle. I have a nodule the size of a walnut under my skin at the base of my neck. A doc from philly and buffalo is watching me for that. I also have scoliosis pretty bad and it is unable to be braced becuase it is the upper part of my back.