Neurofibromatosis is a genetic, neurological condition that affects approximately one out of every 3,000 people worldwide. NF causes tumors to grow throughout the body, which can lead to life-altering (as well as life-ending) complications. Sometimes you can look at someone and tell they have NF, but most times, you would have no idea.
There is no cure.
At 18 months old, my mother received news that her only child and daughter had Neurofibromatosis. My family had never heard of this condition, and we never knew the blessings it would end up bringing to our family. During this time, my mother also received news that I had tumors on each of my optic nerves, which could eventually cause me to lose my sight. She also was prepared for the seizures in years to come. Oh yeah, she was also told that I had a limb length discrepancy -- that basically one of my legs was four inches longer than the other.
So what did my mom do? She researched as much as possible. She knew the coming years would be filled with doctor visits and trials, but she stuck it out. During her research, she found that many children with NF did not live past puberty due to the fact that the tumors they develop cause many complications for them. And if an NF patient didn't die, they often didn't have the opportunity to lead fully functioning lives as adults.
I, however, beat these odds. Yes, I have had six surgeries, all performed free of charge thanks to Shriner's Hospital for Children. Yes, I had seizures, and yes, I still have my tumors, but you'd never know this by looking at my life. Nobody else in my family has NF. But I know that at the end of the day, I was given this disease because I was strong enough to handle it.
Nursing is both a rewarding and difficult job. Nurses have to be physically and mentally prepared to know that they hold someone's life in their hands. They are also possibly faced with fighting for a patient's life. Well, I have been fighting for my life since the moment I was born. Because of this fact, as both a patient and a future caregiver, I know that I have an "advantage" when it comes to tending to my patients down the road. I know that every patient I get the opportunity to nurture is a blessing as well as an opportunity. Each patient has their own story. And I have been on both sides of that bed. I know the power of a simple touch, smile or listening ear. I know that everything a caregiver does has the potential to impact a patient forever.
NF is a powerful disease. Each of us is affected differently by it. This disease is not known very well, but its impact is anything but small.
I know there is something grand out there for me. If I was given a disease that affects one in 3,000 people worldwide and I am still around to tell my story when many are not, that means I am not finished yet. I was given the opportunity to have NF and be a nursing major because I know that I need to impact lives in some way.
NF goes to show us there is always more than what meets the eye. You'd never know that by looking at me, a college sophomore getting ready to start her nursing clinicals, that I have a mutation on one of my chromosomes that could potentially allow for rapid tumor growth at any point in my life. But I do.
We all have a story. We all have something lurking beneath the surface. As we grow older, we tend to forget this tiny fact. Don't forget that every person you meet could be fighting a battle you'd never know about.
I did not choose NF. NF chose me. I did not choose nursing. Nursing chose me. And I cannot wait to see why.
Most of what is known about NF is has been found out through research done by the Children's Tumor Foundation. Visit their website to further educate yourself and others.