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.
Zoe is my younger daughter and was diagnosed with HLH on March 10th, 2010. Her stem cell transplant to replace her malfunctioning immune system in hopes of curing HLH was on June 23rd, 2010. Zoe is alive and well and considered “cured” after about 2 years of treatment and recovery.
Maya is her older sister, age 2 1/2 as of the diagnosis date. Michelle is my wife, and my name is Evan.