Like many teenagers, Izzy had acne, and we were on a mission to get it under control. She had recently switched from one antibiotic, minocycline, to another, Bactrim. Within two weeks of starting Bactrim, she began showing symptoms of fever followed by a severe rash.

 

Despite being seen by doctors, her condition continued to worsen. She eventually swelled so much that she was almost unrecognizable; her skin peeled from her hands and feet, and she developed liver failure along with other organ involvement and hematologic abnormalities.

 

Over the next two months, she was in and out of hospitals and physicians’ offices — sometimes seemingly getting better, then worse, then much worse, then better — until her death.

 

Izzy died from heart failure caused by eosinophilic myocarditis due to Bactrim-induced drug reaction with eosinophilia and systemic symptoms (DRESS).

 

That is the devastating nature of DRESS Syndrome. It is a progressive condition that can have dangerous flares, even long after the drug has been stopped and treatment has appeared successful. In fact, as in Izzy’s case and many others, these flares can occur when a patient is weaning off high-dose steroids.

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Unfortunately, Izzy was not diagnosed with DRESS while she was being treated. Her condition was attributed to a drug reaction to Bactrim, but DRESS is a distinct and particularly dangerous form of drug reaction that requires specific medical recognition and management.

 

Complicating Izzy’s illness was the severe reactivation of a latent virus — human herpesvirus 6 (HHV-6) — which occurs in more than 50% of patients with DRESS. Patients with this viral reactivation often have a more severe course of illness and a higher risk of fatal outcomes. About three weeks into her illness, Izzy’s blood testing (qPCR) showed an extremely high level of HHV-6 reactivation.

 

What we understand today is that antiviral therapy has shown promise and, in some cases, has been lifesaving for patients with DRESS and viral reactivation. Izzy never had the opportunity to receive this treatment.

 

Upon autopsy, it was discovered that Izzy had eosinophilic myocarditis and high levels of HHV-6 viral DNA in several of her organs.

 

It was never Izzy’s dream to become a medical case study. She hoped to change perceptions and encourage acceptance around human rights issues — work she had already begun as a teenager. However, DRESS happened to her, and she would want her story to help someone else. And so, we tell it.

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