May is Neurofibromatosis Awareness Month. I’m sure most of you reading this have never even heard this word before, but it is something I live with every day. I was fortunate enough to not have the more severe problems that come along with this disorder but I am still affected by this horrible thing.
Talking about this always gets me emotional.
I have Neurofibromatosis Type 1. It was a genetic mutation (It was not passed down in my family but I got it randomly) for me that caused this never-ending defect. Honestly, I hate calling in a defect. I got lucky when it came to the symptoms that affect me and there for in no way should I be complaining. I just want to share my story with you and tell you my struggles that I put up and still have to wrap my head around.
I have never let NF1 stop me from living before. I thought it wasn’t anything except some “skin thing” growing up but the harsh reality hit when I did some research for my college applications. Now just a “skin thing” is what most people know it as, but it is far from it. My roommate and I were joking around when I told her that it’s much more than a “skin thing”, she whipped out her phone and looked it up. Her reaction gave me an idea to write this because I realized just how little people know.
What I got from NF1 is more than Café au Leit spots and huge blotches of discolored skin. It is a learning disability I fought through in elementary school just to be seen as normal. It was the weekly speech class that I missed classes to go to (that helped a lot but I still get people making fun of the way I talk) that I also had to fight like hell to not really need them. I got out of lower level classes and worked my butt off to make it into the top-level classes. I wanted to be normal, and when people pointed out my flaws I knew just how to shut them down. High school for me was the years to prove myself as I took harder classes and was in a vocational program. But it was my senior year when I wrote my paper that was the first time I saw the worse of NF1 my family always protected me from. I had never looked up my mutation before I began my senior project and I became terrified. I had cried. I had even hated my family for keeping this from me, but I knew they never wanted me to blame anything on NF1. There’s psychological issues such as anxiety and depression that are heightened. There are tumors that can grow on the skin. NF1 often caused cancer and in some cases, causes death before the age of 16.
Honestly, I’m okay with how it affects me. I know I can handle it. But what saddens me is the fact I would be passing down this disorder if I want to have my own kids. 50% chance they would even have it and 25% they would have it worse than me. But it will always be in the genes of my kids and I don’t want to risk their lives and their kid’s lives to chance something like this. You might find it crazy that I’m only 18 and have already decided that I’ll only be adopting, but you would agree if you looked up what else this disorder can do.
I’m not ashamed of NF1 and never will be. It shaped me to who I am but this is incurable. There needs to be a better way to fight this disorder for people who are fighting for their lives.
May is Neurofibromatosis Awareness month. I live with it every day and It’s time to be a bigger part of the fight for a cure.
