About Me

Ill be 28 in just a few weeks. I have NF type 1 and I live in Oregon. Growing up NF didn't affect me much. Mostly because the doctors didn't know anything about it and other then diagnosing me around 7 they didn't do anything to manage it or check up on it. It wasn't until my twenties that anything NF related was done. I was sent to a dermatologist who ordered an MRI that found I had two tumors in my head. One in my left mesial temporal lobe. Then I had one of my spine that showed several small tumors along my spine. As of right now no action is needed as long as my headaches don't progress and no new symptoms appear. I do have a curved spine as well.  The neruosergoen I'm currently seeing worked with the doctor that first cloned the NF gene so for now I'm in good hands. I'll post my full story at a later time.