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Rebecca’s Fight Like a Girl Story (Neurofibromatosis)

Rebecca's Story (Neurofibromatosis) LROne 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.

Submitted 1-27-12

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.


  1. Maria

    Thanks for sharing your story! Did you know that this post showed up on a “google alert” for NF? People all over the world looking for information will see it and feel less alone. (My eleven year old son has NF1 and an exceptionally pesky brain tumor caused by it.)

    • Rebecca

      No i did not know that, thanks for telling me! That makes me feel good that people everywhere will know about it. Can you tell me anything else about your son? I’ve never met anyone else with NF.

  2. kim gilbert

    Im so sorry for you

    thanks for sharing your story you are in my prayers.Good Luck

  3. Artemio

    Hi I also have nf1 I never actually met anybody with nf1 especially my age I’m only 15 and I would like to met more people that have this problem I read that if you have this problom you can go blind that’s the only thing I care about I don’t wanna go blind if you know please email me or tell me

    • deann johnston

      Myself and my two girls have it. My oldest daughter is 15 also. So sweetie you are not alone

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