Story about Neurofibromatosis .

My Story

Dec 20, 2015

By: Heather


The first time I can remember being diagnosed was at age 10.  I have several small tumors all over, cafe Au Lait spots and a couple of larger tumors. In 2010, I had a GIST tumor removed which according to my surgeon is very common with people with NF. Everyone on my dad's side of the family has/had NF. I've had 2 fibromas removed and while I do feel self-conscious at times about my facial deformity (caused by a large fibroma), I continue to stay positive. 

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