Tuesday, May 28, 2013

A Rare Disorder?

I have done a lot of reading (especially lately) and seen articles that refer to Neurofibromatosis as a "Rare Disease"....But...In the SAME article, state that NF is THE MOST COMMON disorder/disease that affects humans....Soo....What is right?

As I researched, I was able to find THIS description of what "Rare Disease" means:


Sounds accurate, when it comes to NF, doesn't it?

When I explain NF to friends or any interested person...I have NEVER once told them that I have a rare disorder called NF....My explanations typically start out with how COMMON NF is...

1 out of 2500 births!

While it IS true -- That NF carries a very HIGH LEVEL of complex symptoms....Maybe, if we took away the "easy out" excuse that NF is rare...and began talking about how common it actually is...Will get more people talking and learning about it...Just Maybe?


1 comment:

  1. There are a few genetic disorder more common than NF in which tumor growth is relevant. Try polycystic kidney disease about 1 in 500 or 600 hundred and yes those cyst can and do occur in other parts of the body. Non tumor genetic disease example type on diabetes 1 in 400. My doc also says NF is rare in which I have NF but what got me is at the tuberous sclerosis walk in Long Beach CA in May 18 2012 far more people showed up than the NF walk in Irwindale CA October 2012 even though TS effects 1 in 6000. Hope you and your daughter have good health and no new tumor growth. PS I like my steaks and burgers medium well I got sick from a rare steak once.