The autopsy revealed the cause dress — A drug reaction with eosinophilia and systemic symptoms. It is a rare but potentially fatal condition caused by drugs commonly used to treat acne, seizures, and gout.
Subtle at first, then terrifyingly violent, this syndrome is not well known, which makes it particularly dangerous.
“If we knew what it was, we could diagnose it and treat it,” said Izzy’s mother, Tasha Toliver, “but it’s so rare that it stumps a lot of doctors.”
since then Izzy’s death 9 years agoTolliver is on a mission to warn other parents. When I asked my doctor about DRESS, 1 in 1,000 They are exposed to commonly prescribed antibiotics and antiepileptic drugs, such as vancomycin, minocycline, lamotrigine, phenytoin, carbamazepine, and allopurinol, which is used to treat gout. 1 in 10 Case.
Tolliver is troubled by two things: that her daughter’s death began with a relatively harmless treatment for acne, and that she believes the delays in her daughter’s treatment, due to clinicians’ misunderstanding of DRESS, were inevitable.
“Losing a child continues to be a living hell that never gets any easier,” she said.
Missed diagnosis
Experts agree that DRESS can go unnoticed until it’s too late.
“We certainly had cases where the diagnosis was missed,” says Steven Chen, director of inpatient dermatology at Massachusetts General Hospital, whose team sees DRESS-referred patients once every two weeks. He recalls one patient who was admitted to another hospital with a “virus” after taking acne medication. “She was one of the lucky ones,” Chen says. “She went off the medication and it cleared up on its own.”
“Most physicians will have learned about DRESS in medical school, but it can easily be overlooked if you don’t think about it often, especially since it’s relatively rare,” Chen adds. “It can get lost in the mix with all the other facts and information you need to master.”
dress There are several Serious Cutaneous Adverse Reactions (SCARs)The best known is Stevens-Johnson syndrome (SJS). However, SJS primarily affects the skin, whereas DRESS affects the internal organs, making it difficult to identify immediately.
Elizabeth Phillips, director of the Center for Drug Safety and Immunology at Vanderbilt Medical Center, estimates that more than 7,000 people in the U.S. suffer from DRESS at any one time, and up to 10 percent of those who experience the syndrome die within six months.
Most DRESS cases are mild, but some survivors later develop autoimmune diseases such as thyroid disease, lupus, and diabetes. Limited research But what about these risks?
“Long-term follow-up studies are desperately needed in the U.S.,” Phillips says. “Unfortunately, clinical trials for DRESS are difficult because patients are so widely dispersed. You need to follow patients long enough to find these complications,” she adds. “If patients are diagnosed with an autoimmune disease after DRESS, health care providers may not be aware of the connection between DRESS and the autoimmune disease.”
Phillips said older people with pre-existing conditions are the most vulnerable, and for unknown reasons, women also seem to be more susceptible to the syndrome than men. “One explanation is that the severity of DRESS may vary with dosage, and medications are often prescribed in a uniform way, which could lead to overdosing in some women,” Phillips said.
Phillips said members of minority groups appear to be more vulnerable to poor outcomes from DRESS, for reasons that are unclear but could be due in part to less access to quality medical care and specialist support.
“We know that at least 20 percent of patients who experience DRESS do not have the medication that caused the allergy documented in their records, and minority groups may be at higher risk of not having DRESS documented as an allergy,” Phillips says. “This is a medication safety concern, especially as patients move between systems in the U.S.”
Phillips is investigating genetic factors that may make some people, including members of minority groups, more vulnerable. Allergic reactions For medicine. She hopes that doctors will soon be able to offer genetic tests to screen for potential responses to drugs before patients take their first dose.
Raising awareness
In 2019, Toliver DRESS Syndrome FoundationShe runs the project from her home with Nancy Sacassy, whose daughter also died of DRESS-related heart failure.
Hannah SzakaczHannah, 17, helped create an anti-bullying program and aspired to be a nurse. Like Izzy McKinney, Hannah was taking antibiotics to treat her acne, but in her case it was minocycline.
Nancy Sacassy, a licensed marriage and family therapist in Woodland Hills, California, wrote a 2014 book about Hannah’s ordeal of 102 days in intensive care, which included two open-heart surgeries, a fasciotomy (cutting fascia or connective tissue) in her legs, and the loss of part of her large intestine and pancreas before her death.Hannah was here: DRESS, an alarm that needs to be heardHannah wasn’t diagnosed with DRESS until after her death – her mother said doctors initially suspected mononucleosis before treating her for a drug reaction.
“If we knew what it was, we could diagnose it and treat it. But it’s so rare that it stumps a lot of doctors.”
— Tasha Toliver, mother of Izzy McKinney, who died at age 16 in DRESS
Tolliver and Sakacz compiled archives of 640 patients. National DRESS Syndrome Day (July 16th, Hannah’s birthday), building a network of medical professionals, video They’ve conducted interviews with survivors, helped fund and organize the world’s first DRESS conference, and lobbied for more education about DRESS in medical schools. Tolliver says they provide regular counseling sessions through their website, and field one to three emails and phone calls a day.
“They’re like an international lifeline for a lot of patients, and they’re doing the right thing,” said Phillips, who is an unpaid scientific adviser to the foundation.
Harsh lessons learned
DRESS reportedly First described in the 1950sIn the early 1990s, it was called anticonvulsant hypersensitivity syndrome because it was caused by antituberculous drugs. Since then, the name has changed several times, and the term DRESS was coined in 1996. It is now also known as drug-induced hypersensitivity syndrome.
Experts warn that DRESS is a delayed reaction, meaning symptoms may not appear until up to two weeks after the first dose.
Kyle Chen, an attending dermatologist at UCLA Health, said that in his 12 years as a doctor, two patients he saw after their livers, lungs and hearts were already failing have died from the syndrome.
“Patients need not be afraid of taking these common medicines, but if they develop a rash or fever, they should stop taking the medicine immediately,” he says.
Phillips says patients should see their doctor immediately: While some cases may be mild and treatable with topical or oral steroids, others may require more aggressive treatment.
“Communication between doctors is absolutely important, so ideally one doctor, who is the patient’s primary care physician, acts as the coordinator,” she says.
Toliver said she believes a gap in knowledge about DRESS symptoms led to disagreements about her daughter’s treatment at VCU Health in Richmond and caused important care to be delayed.
Tolliver said that during the first of her daughter’s two emergency room visits, a dermatologist raised the possibility of DRESS and noted it in the records. But a doctor who subsequently looked after the case ruled it out because Izzy did not have eosinophilia, an abnormally high level of a type of white blood cell that’s a common indicator of DRESS. She said the eosinophilia was only discovered after Izzy’s death. Doctors treated Izzy for a Type 3 drug reaction, which Tolliver said is less severe than DRESS.
A VCU Health spokesman declined to comment on the matter, citing confidentiality agreements related to the legal settlement. In court documents related to the settlement, the medical group with ties to VCU Health said: ‘Any negligence’ in Izzy McKinney’s death
“This is a drug safety concern, particularly in the United States where patients are moved from system to system and the nature of serious, life-threatening reactions to drugs is not properly documented.”
— Elizabeth Phillips, director of the Center for Drug Safety and Immunology at Vanderbilt University Medical Center
The parents of a teenage girl who died late last year from heart failure after taking the anti-epileptic drug lamotrigine contacted DRESS. Sued She has filed a lawsuit against Seattle Children’s Hospital for negligence and medical malpractice, alleging that hospital staff used racial slurs to delay treatment and downplay the risks her daughter, who is South Asian, faced.
The defendants countered in legal papers that the girl’s condition was “appropriately managed.”
“She was under the care of multiple physicians and under close monitoring,” the lawyers wrote. The family’s lawyer, Martin MacLean, said in an email that the case is scheduled for trial in February 2025.
Steroids, careful follow-up
Treating DRESS may require up to a year of steroid therapy, Tolliver says, and experts warn that all DRESS patients’ hearts need to be closely monitored.
Cardiac problems “may go unnoticed or only become apparent when the steroids are tapered,” Phillips said in an email. “The only way to monitor this is to follow up patients closely and aggressively with EKGs, echocardiograms, and other tests.” [ultrasound of the heart] Measure cardiac enzymes.”
According to an FDA spokesperson, a warning about DRESS first appeared on trimethoprim-sulfamethoxazole’s label in 2020. Izzy McKinney was prescribed the drug five years ago. As of 2024, the American Academy of Dermatology (AAD) no longer recommends the drug for treating acne.
AAD 2024 Guidelines “Given the risk of acute respiratory failure and severe drug reactions, we would try to discourage its use more strongly,” says John S. Barbieri, a dermatologist at Brigham and Women’s Hospital who co-chairs the AAD’s acne guidelines task force.
“The drug may be associated with serious side effects,” the AAD said, and recommended further study.
The AAD guidelines still recommend the drug Hannah Sacasy took, minocycline, but advise doctors to weigh the benefits and risks.
“Acne is a very discriminatory disease,” and treating it remains important, Barbieri said.
But, he added, he feels minocycline is used too often. No convincing evidence of efficacy Comparison with other treatments, including DRESS, and risk of side effects.
“These reactions are rare, but when they do occur, they can be devastating,” Barbieri says, “which is why I rarely use minocycline to treat acne.”
