D.R.E.S.S. Syndrome Foundation

October is Health Literacy Month! Health literacy means the ability to find, understand, and use information to make informed decisions about your health. And unfortunately, health literacy is worryingly low in the US. Nearly 9 out of 10 adults struggle to understand health information.* But, that’s not all their fault! Health communications are massively confusing and complex. Medical jargon, dense messaging, and poorly designed information run rampant in this landscape. For people experiencing DRESS Syndrome, they’re often trying to make life-saving decisions for their health. But, how can they easily do this when the information they receive from doctors, hospitals, and care centers is unnecessarily difficult? Health literacy skills are not merely a person’s responsibility to improve. Medical professionals, organizations, and systems must communicate plainly so patients can easily understand the information that affects their health and lives. In honor of Health Literacy Month, here are some commonly used medical phrasing and their plain language translations. What confusing medical language are you tired of reading? Let us know in the comments! 👇 *Source: National Library of Medicine ------------------------------------------------------------ Video Definitions: - Exanthematous morbilliform eruption and morbilliform drug exanthem A rash that looks like measles and spreads across the skin. The word "drug" means a medicine caused it. - Exfoliative dermatitis Red, inflamed skin that peels or flakes off over large areas of the body. - Facial edema Swelling in the face. - Systemic involvement The reaction affects organs inside the body, not just the skin. - Latency period The time between starting a medicine and getting sick. With DRESS, this is usually 2 to 8 weeks. - Culprit drug The medicine that caused the reaction. - Malaise Feeling sick, tired, and run down. - Sequelae Health problems that show up later because of an illness. * National Library of Medicine

Have you signed our petition? ✍️ We’re urging the U.S. Congress, NIH, and FDA to dedicate research funding for better understanding of severe cutaneous adverse reactions (SCARs) like DRESS Syndrome. To date, no dedicated research funding exists … despite ongoing new cases of SCARs to existing and new medications. despite the lives of patients and families forever changed as a result of SCARs. despite a $150 million burden on the medical system each year from people developing these severe drug reactions. We will not accept these outcomes. Patients deserve to better understand the disease afflicting them. Families and caregivers deserve to know how to better navigate care for loved ones. Researchers deserve the funding they need to lead scientific understanding. The time to act is now. Join us! Sign our petition today: dresssyndromefoundation.org/…... #AllHandsOnDRESS

Prof. Michael Ardern-Jones’ research is revealing what makes DRESS biologically distinct—and why better diagnostics and treatments require global collaboration. We’re raising our hands for the investment needed to move this work forward. #AllHandsOnDRESS #DRESSSyndrome

A message from our Scientific Advisor Dr. Elizabeth J. Phillips of Vanderbilt: “No single lab, clinic, or patient can solve this alone. But together—all hands on DRESS—we will.” #AllHandsOnDRESS #DRESSSyndrome

Today is National DRESS Syndrome Day. 💜 Awareness saves lives. The sooner DRESS is recognized, the sooner patients can receive the right care. Today, patients, families, providers, and allies are raising their hands to spread awareness. Follow along as we share voices from around the world. #AllHandsOnDRESS #NationalDRESSSyndromeDay #DRESSSyndrome

Join us tomorrow for National DRESS Syndrome Day. 💜 We’ll be sharing patient stories, research updates, and ways to take action—including our petition for dedicated federal research funding. All Hands on DRESS starts July 16. #AllHandsOnDRESS #NationalDRESSSyndromeDay

National DRESS Syndrome Day is July 16! 💜 Each year, we recognize this day worldwide to build awareness of DRESS Syndrome and honor patients who’ve experienced this severe drug reaction. Our 2026 theme is "All Hands on DRESS” — and we’re driving action to better understand, and ultimately, prevent DRESS. 🙌 DRESS Syndrome and other similar severe drug reactions are under-researched and misunderstood. To date, no dedicated funding stream exists in the National Institutes of Health (NIH) or the Food and Drug Administration (FDA) for research into severe cutaneous adverse reactions (SCARs), including DRESS and Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis (SJS/TEN). ​ Our goal is to change this outcome. To do so, we need All Hands on DRESS! You have various ways to get involved this year: - Sign our petition urging Congress, NIH, and FDA to dedicated funding toward SCARs research ✍️ - Write a letter to your Congresspersons urging them to prioritize SCARs research funding (download our template) 🔬 - Raise your hand for DRESS and share a picture of video online as to why awareness matters to you ✋ And many other actions. Learn more on our website! dresssyndromefoundation.org/… #AllHandsOnDRESS #NationalDRESSSyndromeDay

🧵 Year after year, the same drugs keep showing up at the top of DRESS reports. In our registry. In the research. Worldwide. Vancomycin. Bactrim/TMP-SMX. Carbamazepine. Minocycline. Allopurinol. But many different medications can cause DRESS — no matter which drug was yours, your experience counts. Awareness and early recognition matter more than ever. Your reported case is part of the proof. 📋 Register: surveymonkey.com/r/YVRD38H #DRESSSyndrome #SCARs #PatientRegistry #DrugSafety #Pharmacovigilance

For some severe drug reactions, genetic screening can already help identify patients at increased risk before a medication is prescribed. Can we do even better? Encouraged to see research exploring new ways to identify risk before patients are harmed. Read the paper summary: ow.ly/3MTC50Z9cHC Thank you, @Dr_AndrewGibson and collaborators at @MurdochUni, @VUMC, @Harvard Medical School, and @UIC. #DRESSSyndrome #SCARs #DrugSafety #PrecisionMedicine

SCAR 2026: Stronger Together is a wrap! What a powerful week sharing lived experiences of severe drug reactions alongside critical research on these diseases. Thank you to Vanderbilt University Medical Center, Michelle Martin-Pozo, PhD, April O'Connor, Dr. Elizabeth Phillips, and team for your efforts organizing and bringing us all together! We're grateful for the chance to share insights from our Register Your Case survey — self-reported data capturing the lived experiences of patients and their loved ones. And we especially want to thank the patient community members who joined us in person as panelists: - Meghan Garcia, mother of a pediatric DRESS survivor - Amy Emberly, DRESS survivor - Hayven Green, DRESS survivor They each shared the critical perspective of living with DRESS Syndrome, from the difficulty of getting a diagnosis to long-term health effects and the gaps in navigating this complicated disease. Their stories were powerful. Their presence even more so. Thank you for all you do to advocate for better treatment and deeper research. You and your voices matter. Another shout-out goes to the SJS/TEN patient community and our friends at Stevens-Johnson Syndrome Canada and SJS Awareness Oregon. It was powerful being in the same room together and learning from your lived experiences of a different yet similar severe drug reaction. And, a sincere thank you to every researcher and clinician working hard to better understand severe cutaneous adverse drug reactions (SCARs) and help patients. Your work is making a difference. Here are highlights from the meeting: - Dr. Dean Naisbitt offered an insightful framing of who's at risk — all of us carry HLA and T-cell receptors capable of engaging common culprit drugs, and TNF-α may play a role in who develops a reaction. - Dr. Roni Dodiuk-Gad stressed the social and mental health impacts on patients and how collaboration and recognizing what we don’t yet know is critical for improved care. - Dr. Annick Barbaud mapped the role of skin testing in informing drug causality and cross-reactivity in SCAR, including existing gaps and what consensus will require. - Dr. Saskia Oro made the case for higher-resolution evidence on systemic steroids as the staple treatment and outlined recommended next steps. - Anita Hanson introduced the "My SJS Passport" — a tool to support survivors after diagnosis, sparking discussion about a potential "My DRESS Passport." We look forward to seeing what develops. - Dr. Elizabeth Phillips shared critical updates on genetic testing and SCAR, including HLA prediction, current gaps, and pathways to deeper patient support. We continue to believe in a world where severe drug reactions are identifiable, treatable, and preventable. Meetings like this bring that vision one step closer.