Living with NF

Well Zach’s hernia surgery went pretty smoothly. He’s still sore but is finally starting to get around again. I’m thankful everything has gone so well.

In other news, I have an appointment scheduled in July with a neurofibromatosis specialist. Neurofibromatosis is a disease that affects everyone differently, so all I can do is tell you how it has affected me. I’ve known I’ve had it all my life. Up until about 4 years ago, the only thing I knew about my nf was that I got it from my dad and that I had some café au lait spots on my body. The spots never really bothered me because they aren’t super noticeable and kind of just look like birthmarks.

In college, things began to change a little. I started noticing a couple of painful tumors on my ribs and in my abdomen. The tumors were hard to see, but you could definitely feel them. They were quite painful when bumped or if I laid on one, like while trying to relax or sleep. I looked at getting them removed (about 4 or 5) but didn’t because it was hard to schedule any appointments without missing any “college.” Neurofibromatosis is a progressive disease. That means it gets worse as time goes on. Since my nf has been pretty mild all my life, I’ve never really seen a doctor about it. But now, I’m pretty sure I have around 20 tumors (probably more) and I really think that I need to get a doctor that can actively monitor it. Nf can lead to things like cancer. While cancer from nf is pretty rare, I just don’t think it’s a good idea anymore to do guesswork on how many tumors I have, or how much they have grown.  I’m super excited about seeing this specialist and getting my nf under control.  Since they’re in a lot of places now, it can be hard to get comfortable without hitting or smushing one somewhere. I mean there are only so many ways I can lay when they are on my head, both sides of my ribcage, abdomen and armpits. Now I’m noticing that a lot of my shirts are bothering me due to a few newly discovered tumors.

I’m honestly not trying to complain or get you to feel sorry for me. I’m really blessed that my nf has been so mild for so long. Do any googling on nf and you will see how bad it can get. I’m excited about seeing this doctor. This will be the first doctor I’ve seen that really knows much about the disease. I’ve been doing some reading on him, and he’s supposed to be one of the leading experts on nf. I’m blessed to live pretty close to MD Anderson. They have one of only few nf clinics in Texas. After I see Dr. S in July, I will blog about my appointment. Have you heard of nf or do you know someone with it?