Imagine walking into a doctors office with a common cold, but nobody has heard of it before. Or imagine going to your doctor with a suspicious looking mole, and having him tell you that he has never treated a patient with a mole before. Imagine having a trained medical professional, who is "supposed to know everything" look at you and say you're fine when you're clearly not. This is what many individuals living with Neurofibromatosis face on a regular basis. I'm sure many of you who live in Canada know how incredibly difficult it is to find a doctor who is well educated on Neurofibromatosis...almost impossible. One thing that always baffles me is how could there be so little knowledge revolving around a genetic disorder that has a prevalence rate of 1 in 3000!
I have been extremely lucky over the past 9 years to have had absolutely wonderful doctors taking care of me, and I attribute much of their work to where I am today. I have been cared for from specialists such as pediatric neurosurgeons to pediatric endocrinologists, orthopedic surgeons and pretty much everything in between. Although I have had stellar care, most of these specialists had either never heard of my condition or had never treated someone with it before in their practice.
I clearly remember the first time I saw a neurosurgeon at the Stollery Children's Hospital. When my neurosurgeon walked through the door the first time, I had an eerily calm feeling sweep over me, as I knew I was in capable hands. It wasn't until the middle of the appointment that I asked him "so, how many other patient's do you have with Neurofibromatosis?" thinking he would say he maybe had a dozen or so. He looked at me, frowned and said "You're the only one. I've never treated anyone with that condition before". I could feel my heart starting to beat a little faster as anxiety began to set in. Certainly this was all new to me, and I was slightly horrified to find out that this would be new to him as well. I kept asking myself where all of these other patients were hiding, because I knew they were out there somewhere!
This trend continued with majority of the other doctor's and specialists I saw over the years. Out of the THIRTY FOUR I've seen since I was born, I think it would be safe to say that maybe 8 have cared for someone with NF before, and majority of those 8 were doctors were at the Mayo Clinic in the USA. I was even asked what Neurofibromatosis was once...seriously...
Ultimately the point I'm trying to make is that we need to raise awareness for NF, and allow people like myself to fight this illness knowing our physicians are well educated on the disorder here in Canada. NF deserves to be featured on the news, on the front pages of newspapers and have articles in magazines. People like myself shouldn't have to hope that the medical professional they are seeking out is educated on Neurofibromatosis, we should be confident and know that they are educated. We need to raise awareness, because people with NF deserve the chance to fight this disorder. It's not fair for us to always be the teachers and educators on this illness while seeking medical advice. I don't have any issues with teaching other people about NF, but we shouldn't have to educate the medical community. We deserve to have our voices heard!
Thanks for reading everyone!!