Friday, February 28, 2014

Rare Disease Day

Chances are, you have been to this blog before.  You either know me personally...Or have gotten to know me on-line.  If you know me personally...Then you know that I don't quite fit in...And if you think that I do...We should seriously spend more time together. :)

I'm weird.  I know it.

If you have come within 2 feet of me...You also know that I don't look quite normal.  If you have been afraid to ask...I get it.

My eyes are dark and sunk in....I am short...And awkward.  I have small bumps that line my face and neck. The tumors also partially cover my belly and back.  I don't typically offer any explanation, unless someone asks me about it....Even then...I sometimes feel like I could do a better job.

I have Neurofibromatosis.  If you 'Google' it....You will see images that will probably frighten you.  And the odds that you have come across someone with NF are rare...But, NF, in fact is THE MOST common genetic disorder known to exist in humans.  

NF is far from RARE.  

But I thought I'd share a little about what NF looks like for our family

Tumors don't just grow on the outside of the body...
These are MRI images of the brain of my now 18 year old daughter with NF.

Very typical...Splotchy - Spotty skin

Yep Tumors...I have them all over.  I'm not contagious. I promise.

I may look a little weird to you....And you may wonder what the heck is wrong with me.  To YOU, I may be the rarest thing you have ever seen....And that's okay....Just don't let THAT keep you from becoming my friend.

1 comment:

  1. I've seen pictures of you and your children. You are all beautiful. More important than outside beauty is that which is inside you. I am a stranger to you, yet you helped me get through a very difficult place in my life. My daughter will benefit tremendously from the time you took out of your busy life (let's face it, moms are busy) to communicate with me personally. For that I thank you.