HLH Journal is my attempt to document my family’s experience with HLH (Hemophagocytic Lymphohistiocytosis).
Upon my daughter’s diagnosis I began to look for information and experiences with this disease in hopes of gaining insight into what we might expect. I wasn’t able to find many personal experiences readily, so I will attempt to document my own and perhaps my wife and older daughter’s as we follow a path toward treatment and, hopefully, a cure.
If you have just come across this and wish to see the beginning, this link is to the first post. From there you can navigate chronologically. If you need a summary or a place to start, Start Here.
Zoe is my younger daughter and has been diagnosed with HLH as of March 10th, 2010.
Maya is her older sister, age 2 1/2 as of the diagnosis date.
Michelle is my wife.
My name is Evan