Neurofibromatosis

Home Info Treatment Blog Daily Life New Technology Cites

Rebecca's Fight Like a girl Story

One day about 10 years ago I was at my pediatrician’s office having my 5 year old check-up and when the doctor looked under my tongue she found a lump sticking out of the floor of my mouth. Thus began my never ending (there is no treatment or cure) battle with neurofibromatosis type 1. It is a disorder that causes you to get tumors called fibromas anywhere in your body. This particular one was about the size of a golf ball and had been growing under the floor of my mouth in my chin for so long that it had started to stick out.

Finally about a year after it was found they decided they needed to remove it. That meant a week in the hospital and surgery. To be honest being 6 I was terrified. I was tough though. They had to force pain meds on me because I told them I didn’t need it. I was lying of course but I wanted to deal with it instead of taking the “yucky” stuff.

I am 14 now and I currently have about 6 known fibromas with 2 being semi-problematic. In 2 weeks I have another MRI (this will be my 8th) to find out if they need to remove the big one on my neck. I will also get an update on if I need more surgery then.

Life with NF1 sucks, of course, but at least no one can tell because you can’t see any of them so I guess that’s better – although they say that NF gets worse during puberty so right now is kind of touche. Most of the time I don’t think about it until I see them. They hide under clothes all day. The only thing that gets me is that there is no cure.