Connor

Hey there! Im Connor, an average American teenagers. I look, talk, and act like you. The only difference is I have Neurofibromatosis, but you cant tell unless you look really closely at my chest, where most of my neurofibromas are. My life with Neurofibromatosis (NF) started when I was 9 months but it took them 4 years to actually confirm I had it. I have a very minor case compared to others. Ive had yearly MRIs for most of my life, now its less frequently. Some fun facts about me include I'm 1/2 British and enjoy photography. I eventually want to do a NF photo shoot! Enjoy the blog!

My NF story:

I'm Connor Murphy and I have Neurofibromatosis. I was suspected of having Neurofibromatosis type 1 (or NF or NF 1 for short) at 9 months but it took another 4 years (when I was 5) to confirm it. I My NF was from a random mutation making me the first in my family to have it. I consider myself one of the lucky ones. I have a very mild case. I have no vis visible tumors or neurofibromas, unless you know what and where to look. Because of my NF I have a tumor on my brain, Lisch Nodules  (pigment in my eyes), neurofibromas, ADHD, Cafe au lait spots (darker pigment than the rest of my skin), and a slight math learning disability. Each year my parents and I would make the 2 hour drive from New Jersey to Pennsylvania to CHOP (Children’s Hospital Of Philadelphia). There I would get eye exams and see my NF doctor, and get my yearly MRI. I did that for most of my yearly check-ups. Recently I started to go to a more local Hospital (my mom works as a PT there) for my MRIs, and have started to see a NF specialist in NYC- which is about 45 mins away compared to 2 hours. The only thing I don't like is now that I'm older I have to lie still for a good hour with beeping and buzzing and noise right in my ears which are semi-sensitive. Ive only had MRIs, so far no surgeries, which makes me quite lucky. Many of my friends have had a quite of them. With my new doctor came a new opportunity-- camp. I was closed about my condition until last summer (2012) when I went to a camp for kids with NF (Camp New Friends) for the first time (you can read about it a bit later on). The camp made me more confident and open about myself. Since then Ive made it my goal to start getting more awareness about NF. Thats exactly what I did. At camp I met many people who understand what Ive been though. I'm proud to call several of the my closest friends. I started telling my friends, posting on Facebook and twitter, just trying to get more awareness. I have started a blog with Allison, Logan, Jake, and Dylan who also have stories featured in this book. The blog is called The Kids With Spots. We can be found on Youtube, Facebook, Blogger, and Twitter under the same name. On it the 5 of us will be talking about our daily lives with NF, with our friends as guests every now and then- just being ourselves trying to raise awareness. NF has made me who I am today- I have Neurofibromatosis but it dosent have me.