Why I write about health #NHBPM

I choose to write about health topics simply to bring awareness. As many of you know, my son was diagnosed with neurofibromatosis, apraxia of speech, autism, and has a retained tonic neck reflex. He also wore a cranial band. My husband has trigeminal neuralgia. My main focus of topic has been neurofibromatosis though. Why?


Well, first off, it's NOT a rare disorder. NF affects 1 in 3000 people. That's over 100,000 Americans, yet no one's heard of it. I'd never heard of it until it was brought up as a possibility for a diagnosis for my son. If that many people have this, why don't more people know about it?

I also blog about our experiences to help others. At one point in time, I was the only trolling Google looking for people's experiences with cranial banding, apraxia, etc. If my little blog can help that scared parent, scared patient, etc, then it's worth it.

But, I don't just blog for that. I blog to give my son something to read as he grows up. Pictures are great, but real time posts about what was going on make it better. One day when he's an adult, he'll be able to go back and read these posts and see exactly how things progressed. That on a Wednesday he went and was fitted for his second band. Or that his bigger sister said something silly to him while having a sweat test done. Things pictures don't tell you because memories fade.

So, stick around. I do blog about other things, because first and foremost, this is my personal blog. I share recipes, I rant, I post pictures for my family, but most of all, I want to share awareness.