Candlelight Vigil Seeks Syndrome Awareness

ERMA – Feb. 27 marked the second anniversary of the death of Chase Gartner, a 17-year-old youth whose life was claimed by Hemophagocytic Lymphohistiocytosis, commonly called HLH. It is a little-known autoimmune disease that can be inherited (familial HLH) or acquired (secondary HLH).  
In the case of the Erma teenager, the syndrome was secondary to a viral infection. The disease first showed symptoms just days before Christmas 2014 and claimed Gartner’s life by the end of February 2015.
What makes HLH such an insidious disease is not only its virulence but its anonymity, its ability to begin its blitz attack on an otherwise healthy individual while going undetected by a medical community that often lacks the specialized knowledge to make the correct diagnosis.
HLH is often fatal because early detection is so problematic.
For Erica Gartner, Gartner’s older sister, the vigil at her home on Sheridan Boulevard was meant to do more than celebrate the life of her baby brother. 
It represented an attempt to have the candles shed some light on the disease itself. Bringing attention to HLH is what she has tried to do in many ways in the past two years.
Erica Gartner, 29, is committed to her fight against HLH. She proudly displayed her medal signifying participation in the annual HLH 5K in New York, #5KFORHISTO. Raising awareness of HLH has become a passion for Erica and her mother, Terri Gartner. 
The women tell the story of the teen’s onset of symptoms, his trips to the emergency room and final admission to Cape Regional Medical Center on his second try.
After inconclusive testing, Gartner was transferred to Children’s Hospital of Philadelphia (CHOP) where the diagnosis was made.
Gartner was stabilized at CHOP and put on a regime of weekly outpatient chemotherapy while he stayed at his sister’s home. Two siblings were cleared as potential bone marrow donors.
A bone marrow transplant is the one best way to beat HLH since it substitutes a new immune system for the impaired one. The disease moved quickly, and complications from a blood transfusion defeated the doctor’s attempts to suppress autoimmune attacks on the patient’s healthy organs.
Gartner died before he was able to try the bone marrow transplant.
As friends and family gathered for the vigil, young children, oblivious to the night’s purpose, played in the yard.
A table of memorabilia was set up on the porch in remembrance of a young life lost.
Bringing greater visibility to HLH was important to the night’s activities. Gartner’s family believes that lives could be saved if the non-specialist members of the medical community could recognize the syndrome’s symptomatology and get a patient referred correctly at the earliest possible date.
Speed and early detection are essential if the disease is to be beat.
HLH is not a common disease. In its inherited form it often claims the lives of babies and the very young. What makes its acquired form so problematic is that we do not know how often HLH strikes. It is considered rare, but that is based on instances when the syndrome of symptom, including high continuous fever, rash, and joint pain, are correctly diagnosed.
HLH can claim victims while remaining anonymous, its symptomatology misdiagnosed. Its frequency, therefore, can be a matter of some debate.
There are no pink ribbons for HLH. No expensive drug treatment is the center of endless pharmaceutical ads on TV. Better known disorders claim much larger slices of the funds available for medical research. HLH stays in the shadows.
For those in attendance at the Chase Gartner vigil, most were celebrating the life of a loved one. For Erica and Terri, this was one small attempt to call attention to and raise awareness of a deadly enemy. Theirs is truly a candle in the darkness.
Information on HLH is available online at https://www.histio.org. Anyone wishing to help with the costs of Erica’s 5K run in July 2017 can do so at https://www.crowdrise.com/chase-for-a-cure/fundraiser/ericagartner.
To contact Vince Conti, email vconti@cmcherald.com.