Stephanie was born after a full-term pregnancy on January 29, 1992. She had a fever at birth to due exposure to Group B strep, but recovered fully and was a healthy infant. In October of that year, she had an ear infection and developed a full body rash.  We assumed it was a reaction to the antibiotic, so the doctor changed medication and the rash went away for a while.  On Halloween, the rash reappeared on her face and body.  She also started running fevers that went up to 105 degrees.  We made numerous trips to the pediatrician’s office, and the lab tests showed no clear cut answers.  Stephanie continued to get sicker and had hives all over her body and very high fevers that would come and go at random.  Her liver and spleen became enlarged and she became very lethargic.

By early December, Stephanie had been admitted to 2 different hospitals with no diagnosis.  Finally, she was sent to Johns Hopkins Hospital in Baltimore, MD where she was finally diagnosed with Hemophagocytic Lymphohistiocytosis (HLH) in December 1992. At the age of 10 months she began an aggressive course of intravenous and intrathecal (into the spinal fluid) chemotherapy which continued until October 1993.  She has been in remission since then, and has shown no sign of the disease recurring.

Stephanie is 34 years old, a Nurse Practioner in primary care and living in Charlottesville, Virginia. 

There was very little information about HLH at that time, and teaching hospital libraries were the only place where you could read anything about it.  In that pre-internet world we felt very alone and scared.  Through the Histiocytosis Association of America we have been able to contact other families who have been affected by HLH and other forms of histiocytosis and realized that we are not alone.