When Izzy McKinney was a young adult who wrote writing, played the violin, and was proud of her makeup pencil skills, she was a young woman. She likewise had zits.
She tried oral medications and finally medications. Two months after starting a doctor-prescribed antibacterial — trimethoprim-sulfamethoxazole — Izzy came down with a minor illness.
Less than three months later, one fortnight after her 16th birthday, Izzy’s brain failed, and she died.
An examination revealed a drug response characterized by anaphylaxis and widespread symptoms. It’s a rare but fatal condition that is frequently treated by medicines for rheumatism, seizures, and acne.
Subtle at first and then terrifyingly intense, the syndrome is n’t well known. That makes it especially harmful.
” If you know what it is, you can diagnose and treat it”, says Izzy’s family, Tasha Tolliver. ” But it’s so surprising that some physicians are confused”.
Tolliver is haunted by two points: Her sister’s death began with cure for acne, things relatively mild. She also thinks that her mother’s treatment was delayed inexplicably because of professionals ‘ misunderstanding of DRESS.
Losing my baby is still a living heaven, she says.
Missed symptoms
Experts concur that DRESS may sail unnoticed until it is too late.
Steven Chen, the director of hospital dermatologist conversation at Massachusetts General Hospital claims his team sees people referred to them with DRESS when every couple of weeks, says,” There have certainly been cases where the treatment was was missed. He recalls a case in which a person claimed she had been taken for “virus” after receiving acne treatment somewhere. ” She was one of the wonderful people”, Chen says. ” She stopped the treatment, and it went away on its own”.
” Most specialists should have learned about DRESS in medical class, but it can easily be overlooked if you’re not thinking about it often, especially since it’s fairly rare”, Chen adds. It” may get lost in the mixture with all the other facts and information you are supposed to learn.”
is one of several, the most well-known of which is But SJS mainly affects the skin, while DRESS involves internal tissues, making it harder to rapidly recognize.
More than 7, 000 people in the United States are thought to be suffering from DRESS at any time, according to Elizabeth Phillips, director of the Center for Drug Safety and Immunology at Vanderbilt Medical Center, and up to 10 % of those who develop the condition pass away within six weeks.
Although the majority of DRESS instances are mild, some survivors after develop inflammatory conditions like diabetes, thyroid disorder, or lupus. There is about these challenges, yet.
” We urgently need long-term follow-up research in the United States”, Phillips says. ” However, clinical trials are hard to do with DRESS because people are thus spread out. People need to be effectively followed to look for these difficulties”, she adds. The company may not make the connection between a patient’s DRESS and the autoimmune condition when a person is diagnosed with an immune disease after receiving a DRESS.
According to Phillips, older people who have preexisting medical conditions are at risk for the illness, and girls also appear to be slightly more susceptible than males, for reasons that are unknown. ” One description may be because the intensity of DRESS may depend on the dose”, she says,” and medications are usually prescribed in a one-size-fits-all method that leads to over-dosing in some people”.
Minority group members appear to be more prone to negative DRESS benefits, Phillips says, once for undetermined reasons, though lack of access to high-quality health care and support from experts may contribute.
According to Phillips,” we do know that at least 20 % of patients who have had DRESS do not have the suspect drug recorded as an allergy on their history, and that plurality groups may be more at risk than that,” according to Phillips. This is a concern for drug safety, mainly because individuals move from one system to another in the United States. S”.
Phillips is researching hereditary elements that may make some people, including members of minority groups, more susceptible to prescription drugs. She hopes that specialists will soon be able to perform genetic testing to examine potential side effects of drugs before a patient takes the first pill.
Building knowledge
In 2019, Tolliver co-founded the, which she runs out of her apartment, with Nancy Szakacsy, whose daughter even died of DRESS-related heart failure.
, 17, had helped create an anti-bullying programme and aspired to be a nurse professional. Like Izzy McKinney, Hannah likewise took an antibiotic to cure acne — in her case, tetracycline.
Nancy Szakacsy, a qualified marriage and family therapist in Woodland Hills, Calif., describes Hannah’s following 102-day struggle in important attention, which included two open-heart surgeries, fasciotomies — cutting into the tissue, or fibrous tissue — in her legs, and the loss of her colon and part of her pancreas before her death, in a 2014 book called:””. Hannah was n’t given a DRESS diagnosis until after she passed away. Initially, doctors suspected she had mononucleosis before treating her for a drug reaction, according to her mother.
” You can diagnose and treat it if you know what it is. But it’s so uncommon that many physicians are confused”.— Tasha Tolliver, mother of Izzy McKinney, who died of DRESS at age 16
Tolliver and Szakacsy have assembled an archive of 640 patients, registered a ( July 16, Hannah’s birthday ), established a network of medical experts, created a of interviews with survivors, helped fund and organize the first global DRESS Conference, and lobbied for more instruction about DRESS in medical schools. According to Tolliver, they answer one to three emails or calls a day and frequently provide advice through their website.
” They’re like an international lifeline to so many patients, and they’re so spot on in what they do”, says Phillips, the foundation’s pro bono scientific adviser.
Hard lessons
DRESS was reportedly brought on by anti-tuberculosis medications and known as anticonvulsant hypersensitivity syndrome. Before being named DRESS in 1996, it changed its name a few more times over the years. Today, it’s also known as drug-induced hypersensitivity syndrome.
DRESS is a delayed reaction, experts warn, with symptoms appearing as much as two weeks after the first dose of medication.
Dermatologist Kyle Cheng, an attending physician at UCLA Health, claims he has seen two patients pass away from the syndrome because they arrived in his care with their livers, lungs, and hearts already failing after a 12-year medical career.
” Patients should n’t be scared of taking these common medications, but if they develop rash or fever, they should stop the medication promptly”, he says.
According to Phillips, they should also immediately seek medical attention from their primary care physician. They may have a mild case, which can be treated with topical or oral steroids, or need more aggressive treatment.
” Communication between doctors is definitely important, so ideally one doctor, the primary care physician, is coordinating things”, she says.
Tolliver claims that due to varying opinions about her daughter’s treatment at VCU Health in Richmond, she believes that critical treatment was delayed because of gaps in knowledge about the symptoms of DRESS.
During her daughter’s first of two emergency room consultations, a dermatologist raised the possibility of DRESS, noting it in her records, Tolliver says. However, a later medical examiner rejected the claim because Izzy’s eosinophilia, a type of white blood cell that is a hallmark of DRESS, was not suspected by the doctor handling the case. She claimed that only after Izzy’s death did eosinophilia become known. Doctors treated Izzy for a Type-3 drug reaction, which is less severe than DRESS, Tolliver said.
A confidentiality agreement relating to a legal settlement was used by a VCU Health spokesman to decline to comment on the case. In court documents related to the settlement, the medical group associated with VCU Health denied “any and all negligence” in Izzy McKinney’s death.
This is a concern for drug safety, especially because patients move from one system to another in the United States and because there is n’t enough documentation of a severe life-threatening reaction to a medication.— Vanderbilt University Medical Center’s Director of the Center for Drug Safety and Immunology, Elizabeth Phillips
The parents of a teenage girl who died of heart failure connected with DRESS late last year after suing Seattle Children’s Hospital for careless and negligent. According to their lawsuit, the hospital staff delayed treatment and downplayed the risks that their daughter, who was of South Asian descent, faced due to racism.
In legal filings, the defendants countered that the girl’s condition was “appropriately managed”.
” She was cared for and closely followed by multiple physicians”, their lawyers wrote. In an email, the family’s attorney, Martin McLean, said the case is set for trial in February 2025.
Steroids, careful follow-up
Steroid treatments for as long as a year may be required to treat DRESS, according to Tolliver. In addition, experts warn that the heart should be closely monitored in all DRESS patients.
According to Phillips, heart issues “may go unnoticed or only manifest after cutting back on steroids.” ” The only way to monitor this is to make sure to do careful follow-up of patients and be proactive about doing the electrocardiogram, echo]ultrasound of the heart ] and measuring cardiac enzymes”.
In 2020, warnings about DRESS first appeared on labels for trimethoprim-sulfamethoxazole, according to an FDA spokesperson. Five years prior, the drug was prescribed to Izzy McKinney. The American Academy of Dermatology ( AAD ) no longer recommends the medication for acne as of 2024.
The AAD’s 2024 “make an effort to more strongly recommend against its use given the risks of acute respiratory failure and severe drug reactions”, says John S. Barbieri, a dermatologist at Brigham and Women’s Hospital who co-chaired the AAD’s acne guidelines working group.
The drug “may be associated with severe adverse reactions”, the AAD says, recommending further study.
AAD guidelines still advise the use of minocycline, the medication Hannah Szakacsy took, with the advice that doctors should weigh the advantages and drawbacks.
” Acne is a very stigmatizing disease”, and treating it remains important, Barbieri says.
” These reactions are rare, but when they happen, they can be devastating”, Barbieri says. ” That’s why in my practice I almost never use minocycline for acne.”