Although NF has a prevalence of 1 in 3,000 I am still beyond shocked and frustrated that there is SO little knowledge of NF in the medical community. How could something so common be so mysterious or unknown? NF is more common than Cystic Fibrosis, Muscular Dystrophy, and Tay Sach's ... COMBINED! How is NF still in the dark? I've made this analogy before in previous blog posts, but I'm going to use it again to make a point...
Imagine walking into a doctors office with a common cold. You describe your signs and symptoms, the doctor does a physical exam and takes a look in your throat, listens to your chest with his stethoscope. He (or she) sits there in silence for a minute and finally says "Yeah I'm not really sure what's wrong with you, so I'm going to refer you to another doctor. I've never seen or treated a common cold before." That's how people with NF feel most of the time when seeing a physician.... complete frustration right?
I remember one of the first times that I had a doctor ask me what NF was. I had been referred to a specialist because of some of the tumors that were growing in my abdomen, and their close proximity to my ovaries. My family physician wanted to ensure that these tumors were not growing on my ovaries, so I was shipped off to what was my 5th or 6th specialist. I sat down in his office with my Mom, a little anxious for meeting this new doctor, but hopeful that he would help me get to the bottom of all my problems. When he entered the room he greeted himself and asked me, "So Courtney, what brought you here today?" I replied, "Well, I have Neurofibromatosis, and I have tumors in my abdomen and I need to find out if they are growing on my ovaries or not." Well, I think he gave me one of the blankest stares I had EVER seen.
"Um, what's Neurofibromatosis?" he asked. I was kind of shocked that he was even asking me that question, I mean it's ALL over my chart... he really didn't even look it up before I got there? So I quickly explained to him what NF was and what my journey had been so far with it. "Ohhhh, so you have cancer?!?" he exclaimed after I finished my story.
**face palm.... no I DON'T HAVE CANCER! **
So, that ultimately began a LOOOONG road of people constantly asking me what NF was, and having to explain my condition multiple times to different physicians belonging to multiple different specialties. It`s actually rather exhilarating when I meet a doctor who actually knows what NF is, seems silly right?! I've been bounced around lately between family physicians because they either keep moving or retiring on me, but when I met my newest family doctor she asked me "Oh what kind of NF do you have?!" when I told her about my medical history... I felt like throwing my arms around her and giving her the biggest hug possible. FINALLY SOMEONE ACTUALLY UNDERSTOOD MY MEDICAL CONDITION WITHOUT LOOKING IT UP!
So share this blog till you can't hit share anymore... let's change this trend of people not knowing what NF is! Thanks for reading guys!