Hannah's Story

black-and-white image of a teenage girl with dark hair who grins

Hannah’s story is shared here as it was written by her mother following Hannah’s death from DRESS Syndrome. It reflects the lived experience of one family and the devastating impact of delayed recognition of this condition. We share it in honor of Hannah’s life and to underscore the urgent need for greater awareness, research, and improved care for patients affected by DRESS.

Hannah was taking the antibiotic minocycline for mild acne. Three weeks after starting the medication, she began feeling unwell and developed a fever, rash, and facial edema. It was suspected that she was experiencing a drug reaction, and she was taken off the antibiotic and started on oral steroids. Her symptoms returned during the first attempt to wean off the steroids. It was during the second attempt at tapering prednisone that Hannah’s condition dramatically declined…

On April 19, 2011, Hannah’s heart failed while she was sitting in a doctor’s office. After forty-eight minutes of resuscitation at the hospital next door, the medical team restored a pulse and inserted an Impella device. She was flown by medicopter to Cedars-Sinai Medical Center in Los Angeles. Upon arrival, she had no detectable heartbeat or pulse; her heart had stopped during transport.

Hannah eventually underwent fasciotomies, two open-heart surgeries, and experienced failure of multiple major organs. She had a BiVAD artificial heart implanted and later removed as her own heart struggled to recover. She endured hundreds of X-rays and scans, severe malnutrition, and the loss of her colon and part of her pancreas.

Hannah was in and out of consciousness until she died 102 days later, two weeks after her seventeenth birthday. The cause of death was myocarditis and multiple organ failure due to minocycline-induced drug reaction with eosinophilia and systemic symptoms (DRESS).

In the aftermath of Hannah’s death, her family was left with many questions. With little public awareness of DRESS at the time, they sought answers and worked to share Hannah’s story to help others recognize the potential dangers of severe drug reactions. Her mother later wrote the book Hannah Was Here: D.R.E.S.S., an alarm that must be heard to educate and warn others about DRESS Syndrome.