I had the great honor of contributing to the Children's Tumor Foundation's No NF November campaign. I invite you to read the stories of other brave NF HEROES!
Below is my story!
I was diagnosed with Neurofibromatosis at birth after doctors thought I had a tumor due to my right eye protruding and having a deformed right parietal bone. I had my first surgery at eight days old to relieve the eye pressure caused by Congenital Glaucoma. I have never experienced a moment in my life in which NF has not played an integral role because NF has always made its presence known due to my facial difference.
Until this year, I thought that the hardest part of NF was living with a face that is not normal. A face that causes strangers on the street to gawk and point. A face that made me a target for bullying at school. A face that made me unworthy of love, I know now, as an adult, that my face is just a face and that strangers will gawk and point, but not all strangers. Yes, I was bullied at school, but I also made friends who defended me against bullies. And most importantly, I am worthy of being loved, not because of my face, but because we are all worthy of love.
In September of this year, after having my annual mammogram and breast MRI, I received the call every woman dreads. My doctor at the NF clinic informed me that the MRI detected an abnormal mass, and while I am statistically too young for breast cancer, with NF, I am not. My doctor informed me that she and the radiologist were recommending a sonogram of the breast and another MRI, and depending on those results, a biopsy may need to follow.
I remember getting off the call and silently crying in my office as I slowly digested the information that my doctor shared. I was scared. I was mad at my body for betraying me after everything that we had gone through the last three years, but through the tears, I knew I would be okay. I had the sonogram and the second MRI, and due to inconclusive results, a biopsy was recommended. My fear of having breast cancer intensified as the nurse practitioner informed me that the sonogram and two MRIs had found abnormal masses, but they were unsure if it was the same mass or two different masses, and because of this, I may need two biopsies, depending on the findings of the first.
On September 29th, I underwent a sonogram-guided biopsy, and a few days later, I received a call stating that everything came back normal and that I did not need to worry. I share this story not to scare you but to make you aware that individuals with NF have a higher risk of developing breast cancer than the rest of the population. I feel as though NF and breast cancer are not spoken about as much, but we need to talk about it. NF can cause so much havoc in our lives that doing preventative screening can save our lives.
Neurofibromatosis affects everyone so differently; this is my experience, this is my NF life, but I am not NF. I am a lot more than a woman with NF who has undergone over twenty surgeries and medical procedures. I am an advocate. I am brave. I am a fighter, and so is everyone who lives with this relentless condition.
