Hystiocytosis

I've done a little bit of research, thankfully our pediatrician printed off some information from the internet so we did not have to try and find it ourselves.  My sister-in-law looked it up on her own and did not have a positive experience.  When she told me of her experience, it reminded me of looking up Autism on the internet 7 years ago.  Since I think people should be saved from experiencing too much bad internet information, I will give a short synopsis of what I have gathered at this point.

Histiocytosis - is a disease that results from the over production of white blood cells which damage organs and cause tumors (they are called lesions).  It is a "spectrum disorder" so it could be anywhere from one tumor your whole life, or it could be many through out your body, through out your life.  It is considered an auto-immune disease and while not cancer is similar enough that it presents and receives diagnostic treatments like cancer.  You are never "cured" of this disease but it is considered "probably beaten if you go for 5 years with it in 'remission' ".

When we met with our Pediatrician she called this a very rare disease, something you read about in a text book.  Somehow we did not feel very "special" by this.  She explained that it was a 'black box' disease ( a quick way to explain they don't know a lot about it).  It is a spectrum disease, and that there fortunately was a Histiocytosis center at Phoenix Children's hospital with a world renowned physician.  She already set up an appointment for us the next day at 8:00 in the morning with one of the doctors that worked in fellowship with the really famous one.

As far as the disease goes, it can cause rashes as well as tumors.  It looks like at times these tumors can be open sores as well.  This does look like it can get really nasty if the case is a severe one.  It is considered an "Orphan disease" which is measured by it's occurrence rate.  For Histiocytosis it occurs 1 in 1500 people.  I believe the reason it is called an Orphan disease is because it is not common enough to have a lot of common knowledge (I have yet to meet anyone who knows what it is, other that a few of the doctors) also it receives no major funding, probably because of it's obscurity.

We asked if our other children were at risk for it.  She said that truthfully she did not know because they really don't know what causes it, but that she understood that they do not think it has a genetic link and that our other children were probably not at risk at all for it.