My name is Sandee and this is my story. I grew up in rural New Jersey on a chicken farm. However, by the time I came along we no longer raised chickens. It was a wonderful place to experience childhood. There were woods to be explored and trees to climb. Horse farms were a short bike ride away. I would say it was ideal except for one thing I had NF. This meant physical limitations and trips to Children’s Hospital of Philadelphia, known as CHOP. I knew I had NF forever. My father had NF and passed it down to me. My first memory is actually having hand surgery at CHOP at only five years old. I can still visualize the bright green stitches that adorned my right hand.
I excelled academically at school, however, physically was an entirely different story. Sports and gym class were very difficult for me. Being picked last for a game was the norm. Tenacity did not stop me from participating. I was told I would never ride a bike. Don’t say never to me because that is a challenge and I will try to disprove it. I tried and tried to no avail. Then I had an idea. The lane that leads up to the farm had a slant to it. It gave me enough speed that after many bruised and blood knees I was successful. Voila, I was able to ride a bike and could join the other children on rides!
Now let’s fast forward to high school and adolescence. It was very difficult, but then again whose teenage years were not difficult. The neurofibromas began to appear on my skin. I can even remember the first one I noticed. I had boys that were friends, but not boyfriends. I did, however, have a group of very close friends. One of which is still a good friend today.
College was different, maybe because I went away to school. I enjoyed my studies and made good friends. I began to date. I still spent time in the hospital and NF affected my day to day life as it had through out my life. Even with all the difficulties I faced I still graduated college.
I always wanted to get married and have children. I met someone who looked beyond the NF. We fell in love and married. My dream of becoming a mother came true when we adopted our daughter. I decided to adopt because I did not want the NF to be passed down to another generation. That was my choice and it should always be about choice.
Not only did I get married and become a mother, but I had a successful career. Actually, I had two successful careers. One was in education and the other in the mental health field.
NF has not stopped me from having a happy life filled with family and friends. The people in my life have always been very supportive. I cannot say that I am glad that I have NF. I can, however, say that it has made me very understanding, caring and nonjudgmental of others.
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!
Yes May is NF Awareness month, but in my life and others living with or caring for someone who has NF it is a 365 day a year awareness.
Whether watching your NF Child giving their all to pass a test and come to find out they fail it and the look of disappointment in their eyes of feeling like a failure because NF Causes learning disabilities and anxiety. Watching children in your neighborhood ride their bikes and invite your child to ride but at 11 are to embarrassed to ride with training wheels because of her age but NF and balance issues go hand in hand. To give your child high blood pressure meds, vitamins supplements, and anxiety meds daily because of NF. Meal time being a nightmare because of sensory and texture issues. These are the easiest part sometimes.
Its the endless doctor appoints, worrying about MRI results (scanxiety) endless gas in your car to get them back and forth to lots and lots of Dr’s not just the pediatrician. Tumors can pop up on any nerve at anytime. And the list goes on… Then as you scroll through your newsfeed and see all your NF Family friends post of pain, chemo, surgery, medical billing, and list goes on. THAT IS NF AWARENESS DAILY. So if you or someone you know and love has NF PLEASE help by getting involved, donating and being a part of the NF Community and LETS FIND A CURE.