LISTEN: A college student who fell severely ill last December found help from an expert at Children’s Health Care of Atlanta. GPB’s Ellen Eldridge has more on the pediatric blood cancer specialist treating this rare immune disease.

Ruth McCrady stands outside in a blue graduation robe

Ruth McCrady stands outside in a blue graduation robe. She's a survivor of hemophagocytic lymphohistiocytosis, a rare, sometimes deadly systemic inflammatory syndrome.

Credit: Contributed

When Ruth McCrady returned home during Christmas break last year, she started vomiting randomly, experienced headaches and spiked a high fever.

She had previously been a healthy 21-year-old college student at University of North Carolina. Emergency room doctors couldn't figure out what was wrong, and conducted a bone marrow and a lymph node biopsy.

By Day 14, McCrady couldn't eat and she had trouble walking.

That's when she was diagnosed with hemophagocytic lymphohistiocytosis (HLH), a severe, systemic inflammatory syndrome that can be fatal.

HLH occurs when histiocytes and lymphocytes become overactive and attack the body rather than just microorganisms, according to the Immune Deficiency Foundation.

Children's Healthcare of Atlanta is one of a dozen hospitals in the country with a doctor who knew how to treat HLH: Dr. Shanmuganathan Chandrakasan, a pediatric hematologist/oncologist at the Aflac Cancer and Blood Disorders Center of Children's.

"He goes by Dr. Shan," she said.

Pattie McCrady, Ruth's mother, said they arrived at Children's on Christmas Eve and, by Christmas Day she had a peripherally inserted central catheter (PICC) line put in and immediately started treatment.

"I called it a miracle," Ruth McCrady said. "I got better almost instantly. It was just amazing."

Ruth McCrady smiles from a hospital bed at Children's Healthcare of Atlanta.

Ruth McCrady smiles from a hospital bed at Children's Healthcare of Atlanta, during December 2024 treatment for hemophagocytic lymphohistiocytosis (HLH), a severe, systemic inflammatory syndrome that can be fatal.

Credit: Contributed

By integrating targeted clinical testing with research findings, Dr. Shan and his team were able to find a novel approach to treating Ruth’s HLH that was gentler, harnessing her own immune system (T cells) to do most of the work, Children's said in a news release.

A short course of chemotherapy decreased the chance of overwhelming McCrady's immune system and blocked excessive inflammation by using a novel therapy called emapalumab.

Historically, treatment for many patients in similar situations would be quite aggressive, requiring multiple rounds of chemotherapy followed by bone marrow transplantation (BMT). Despite aggressive treatment, fewer than 50% of those patients become long-term survivors, with many never making it to BMT or not benefiting significantly from it.  

An Epstein-Barr virus that McCrady contracted in November seemed to be what triggered the HLH, she said.

“While Epstein-Barr virus (EBV) typically affects B cells, in Ruth’s case the virus was present in her T cells — the very cells that are supposed to fight and clear EBV became infected,” Dr. Shan said. “Consequently, she struggled to eliminate the virus, which led her immune system to go into overdrive.” 

She said she’s 100% better now and received her degree in statistics and analytics in May with the rest of her class at UNC.

Tags: Children's Health  Georgia  rare diseases