The loss of a child brings terrible grief for parents, but it can also spur important actions that could benefit the rest of us. This next story involves a Richmond family whose teenaged daughter died of a disease they’d never heard of. Today, they’re crusading to educate doctors and the public.
Isabel Tolliver McKinney was a lively 15-year-old who produced an online magazine and played the mandolin handed down from her grandfather.
She loved her friends, her little sister Ava and her parents.
“Hey Daddy, Happy Father’s Day," she said in a voicemail. "You probably don’t have any service right now and are busy dropping Ava off at camp. I miss you, and I will see you when I get back on Wednesday, and then it will be Father’s Day all over again, because every day is Father’s Day! Am I right?”
Like many teenagers, she struggled with acne. Her mother, Tasha Tolliver, took her to a dermatologist who prescribed an antibiotic.
“Within a week her skin had cleared up greatly," Tolliver recalls. "The Bactrim was working. But a couple of weeks later she started to have low to moderate grade fevers.”
Izzy developed an itchy rash, was hospitalized, taken off the antibiotic and given steroids, but when she came off those drugs, her symptoms returned.
“Her fevers persisted. In fact they got worse," Tolliver says. "Her rash morphed into a purple, bruise-like appearance, and it gradually moved down her legs and eventually the skin on her hands and feet would just peel right off. Her face was so swollen that she looked like she had been beaten up in a boxing match. She had fluid coming out of her ears. She had thrush, and she could barely eat or drink.”
Doctors disagreed about what could be causing her problems. They thought maybe she had Epstein-Barre virus, mono, lupus or some other auto-immune disease, but Izy thought she knew where this was heading.
“She tells me that she is dying," her mother recalls. "Of course I say, ‘You’re going to be okay.’ And she says it several times.”
She died in the hospital where an autopsy showed she had an uncommon condition called DRESS – an acronym for drug reaction with eosinophilia and systemic symptoms.
“We had never heard of this term," says Tolliver. "It did not sound like the severe, horrible condition that it actually is.”
DRESS is a delayed but extreme auto-immune reaction to any number of common medications – antibiotics, mood stabilizers and non-steroidal anti-inflammatory drugs. Experts think it strikes as many as 1 in a thousand people who take certain medicines .and it’s deadly in about 10% of cases.
In her grief, Tasha Tolliver spent years reading medical journals, attending conferences and poring over Izy’s medical records.
“I was obsessed with finding the answers,” she explains.
She learned that a genetic test can identify patients at increased risk for DRESS if given certain drugs, and had Izy’s case been diagnosed properly, other treatments might have saved her.
She also found a telltale sign that doctors had missed. DRESS can cause reactivation of the herpes virus, which commonly lies dormant in human tissues. Not only did she have a viral reactivation of herpes, but her mother says the level "was out the roof!”
Today, Tasha, her husband and a California mother who lost her daughter, hope to better educate the medical community and the public about DRESS Syndrome. They formed a foundation and have produced an 11-part podcast featuring experts from around the world.
You'll find it on their website: http://DRESSSyndrome.org
