Histocytosis Awareness Month

I am a Histio Warrior not by choice but because I have been diagnosed with Erdheim Chester Disease, a rare histiocytic disorder.

Histiocytic disorders are a group of diseases that occur when there is an over-production of white blood cells known as histiocytes that can lead to organ damage and tumor formation.  This group is made up of a wide variety of conditions that can affect both children and adults.  In order to reduce confusion, in 1987, the Histiocyte Society classified these disorders into three groups based on the types of histiocyte cells involved:

• The first group is called a dendritic cell disorder, and the most common disease in this group is Langerhans cell histiocytosis (LCH).  Also included in this group are more rare diseases, juvenile xanthogranuloma (JXG) and Erdheim-Chester Disease (ECD).

•  The second group is called a macrophage cell disorder, and includes primarily hemophagocytic lymphohistiocytosis (HLH) and Rosai-Dorfman Disease (RD). 

• The third group is called malignant histiocytosis and includes certain kinds of leukemia and malignant tumors. 

 We all have a finite time to spend on this earth and none of us know how long we will live. The difference between most people and those of us fighting histiocytic disorders is we have a pretty good idea of what will kill us when our time comes.

It's a little unerving at times.