NF Explained

Hello! My name is Elyse. I am creating this blog to share my story about living with Neurofibromatosis, NF for short. I really want more people to know what this disease is so that we can find a cure for it. You are probably wondering, what is Neurofibromatosis anyway? Well, it is not a very common disease. There are a couple types of NF. NF1, NF2, and Schwannomatosis. The type of NF I have is NF1. The most mild case of the three and the kind I will be focusing on throughout my blog. Neurofibromatosis is a genetic disease that affects 1 in every 3,000 people. However for me, it did not start out as genetic. You see, neither one of my parents have NF so I was a spontaneous mutation- as the doctors call it. Kind of like a Teenage Mutant Ninja Turtle... not really, but its fun to make myself laugh when I talk about this. Anyway, something happened to either an egg or a sperm that created the gene for NF and it was passed down to me. How lucky am I?! Now in return, I have a 50% chance of passing that same gene along to any of my future children. Basically this disease is a disorder that causes me to have small benign (non-cancerous) tumors to grow on or under the skin along my nerves. These tumors are visible to the human eye and sometimes don't grow in the most flattering places. I.e. the face. These can grow throughout my life and I am always discovering more tumors in places I have never had any before. One of the most distinguishing characteristics is that I have over 100 birthmarks on my skin, they are called café au lait skin spots as well as a lot of freckling in groin, stomach and armpit area. You'd probably think I only tan there because it is a lot darker than the rest of my skin because many of them are very large. So not only is NF an internal disorder, it has a lot of distinguishing physical factors that make it the way that it is. 

I have been blessed by having a mild case of NF so I shouldn't complain, because many people have it much worse than I, but it is still something I struggle with and wonder why did it have to happen to me. I think growing up was the hardest because along with NF comes learning disabilities. I HATED school. I always felt like I was farther behind than everyone else. But I was told that it was just another part of the NF. I think the hardest part was having ADD, or Attention Deficit Disorder. Thankfully, I didn't have the Hyperactivity, but paying attention in school was hard because I would get so distracted. 

My hope for this blog is to bring comfort to others that may also be struggling with NF, spread the word to others who may not know anything about this disease so that the awareness can be increased, but most of all, I want to bring comfort to myself, because writing it down, sharing my story, somehow makes it not seem as scary.

Thanks for reading!