I have Neurofibromatosis (NF1). Not much was known about the condition in the 1960’s. The signs of NF were there early. I was physically behind. I didn’t walk until I was almost 3 years old. At the time, they didn’t know why. Now we can definitely say it was because of NF. I had the café au lait spots and neurofibromas, but the doctors couldn’t tell my Mom what it was. “If they don’t grow, don’t worry about it”.
As an adult, NF continued to affect me. My blood pressure was a problem as a child and in my early 20’s, I went on medication. More neurofibromas continued to appear and I had some removed. I deal with the discomfort of scoliosis. During my 2 pregnancies, the lumps increased dramatically on my stomach and face. We are blessed with 2 healthy boys. One is NF free, but the other does have NF, including an optical glioma.
Most recently I was diagnosed with cancer in 2016. Gastrointestinal stromal tumors (GIST). Many people that have GIST, also have NF. I had extensive surgery and we will continue to monitor.
NF affects everyone differently. Despite my challenges, I consider myself very blessed. I have not had the NF tumors in my brain or on limbs that required amputation. I will continue to FIGHT !
It’s my hope that we can increase the awareness of NF and honor all our NF heroes!