DRESS Syndrome Foundation

DRESS Syndrome isn’t age dependent. Anyone at any age can react severely to medications, including children. To date, no large-scale, comprehensive studies on pediatric DRESS exist. Most of our knowledge comes from individual, isolated case reports. (Research opportunity!). The same drugs that most often cause DRESS in adults are the main culprits in children: Antibiotics and anticonvulsants top the list. 💊 Diagnostic details to know for children with DRESS: - Symptoms may arise quicker than the normal 2 to 8 week timeframe in children — particularly when antibiotics are involved. This is known as rapid onset. - Eosinophilia isn’t always present and is not necessary to make a DRESS diagnosis. - Pediatric illnesses like common and frequent viral infections can sometimes mimic DRESS symptoms (rash, fever, swollen glands). So, sorting the illness out can be a challenge. Think: “Drug versus Bug” - Pediatric cases should include tests for viral reactivation of HHV-6 and HHV-7. Time is of the essence — a delay in diagnosis can worsen outcomes. Currently, treating pediatric DRESS is generally the same as adults, with systemic steroids being the most common treatment. 👉 Some secondary issues exist that can affect children with DRESS: - Delayed emotional development for kids who’ve been sick for extended periods of time - Psychiatric concerns with depression for kids who’ve been alienated from social circle and friends, and held back in school and sports - Embarrassment due to physical appearance, rash, peeling skin, facial edema, swelling, weight gain from steroids, and long-term complications of autoimmune diseases like alopecia (hair loss). To read more about pediatric DRESS, check out our research resources on our website: https://ow.ly/Clr250TVxRM

Let's talk long-term complications! Some people with DRESS Syndrome may experience a quick diagnosis and treatment. However, for up to 16% of cases, long-term complications can develop and cause an array of health challenges. For this reason, it’s important to note that a first treatment that seemed successful doesn’t always mean lasting recovery. Many DRESS complications can develop weeks to months or even a few years after your first symptoms. These health issues can include (but aren’t limited to): 👉 Rise in Symptoms - DRESS symptoms flare up (suddenly worsen again) if your steroids are lowered too fast - Another medication causes symptoms (the drug may or may not be in the same class as your original DRESS–causing medication) - Viral reactivations develop (or persist), often herpes family viruses 👉 Organ Injury - Organ injury, such as to the liver, kidney, and lungs - Heart injury/Myocarditis (occurs in 13% of cases) 👉 Auto-Immune Disorders - Alopecia areata (causes sudden hair loss) - Fulminant t Type 1 diabetes - Hemolytic anemia (affects red blood cell development) - Myocarditis (inflamed heart) - Thyroiditis (inflamed thyroid) - Systemic lupus erythematosus (short name is “lupus”) 👉 Psychiatric Conditions - Anxiety - Depression - PTSD Make sure that your medical team tracks your health long after your initial recovery (2 to 5 years). And seek prompt medical care should any symptoms emerge or other complications develop!

Congratulations to our 2024 DRESS Heroes! Patients and loved ones from around the world nominated 18 medical experts as their DRESS Heroes. While everyone’s DRESS Syndrome case is unique — these patients are united in having wonderful medical care that helped them during their diagnosis, treatment, and recovery. Often, even helping to save their lives. Thank you to every DRESS Hero who went above and beyond to ensure their patients received the upmost level of medical care. We’re excited to celebrate your dedication and hard work! https://lnkd.in/geG2PVNb

DRESS Syndrome cases are diverse and often severe in nature. So, treating and recovering from DRESS often requires a complete medical team working together to help you. ➡️ You’ll need an attending physician, as well as other medical specialists, such as: - Hospital or medical dermatologist (expert on skin) - Allergist/immunologist - Infectious disease doctor - Hematologist (expert on blood) - Gastroenterologist (expert on the gastrointestinal tract and related organs) - Cardiologist (expert on the heart) - Nephrologist (expert on kidneys) 👉 You may also need other specialists to help treat you. Since everyone’s DRESS case is different, your specific symptoms will guide which medical professionals should support you. Be sure to advocate for yourself to get a full medical team on your side. Their collaborative efforts can be what saves your life!

Often, dormant viruses can reactivate in DRESS Syndrome patients, like human herpesvirus 6 (HHV-6), cytomegalovirus (CMV), and Epstein–Barr virus (EBV). When they do, patients can have a more severe and longer course of DRESS illness. 🗣️ So, let’s talk: Did your DRESS case include viral reactivation? If so, how did this affect your symptoms and treatment plan? Awareness creates action. Let’s support one another!

Viral reactivations can develop during DRESS Syndrome and make your reaction worse, even life threatening. The human herpesvirus-6 (HHV-6) has shown to prefer reactivating in DRESS as opposed to other severe drug reactions like Stevens Johnson Syndrome (SJS). HHV-6 reactivation occurs in over 50% of DRESS cases. These patients can become sicker with a late flare of symptoms and organ failure. ❗This reaction could be an important clue in your diagnosis. So, your medical team may need to investigate viral causes for your illness as part of your diagnosis process. Other human herpesviruses — such as Epstein-Barr (EBV), HHV-7, cytomegalovirus (CMV) — are also known to reactivate in DRESS. They sometimes do so in sequential order. 👉 Ask your doctor if they have checked for these active or reactivated viruses! HHV-6 viral blood tests must be done in a specific way to be certain an "active" versus "previous" infection is present. Also, often, HHV-6 infection won't show up in blood labs until about 2 to 3 weeks after first signs of symptoms. And this virus can reactivate at various times throughout your course of illness with DRESS. ⏱️ So, timing is important. Doctors may need to test you more than once. And some patients may need antivirals to combat this viral reactivation. Identifying if a viral reactivation is present could affect your treatment — and even save your life! Learn more on the HHV-6 Foundation website: https://ow.ly/XEwy50TAnMr

💊 Happy World Pharmacist Day! Pharmacists are integral to healthcare systems and serve many roles in protecting public health. ✔️ Help patients avoid taking medications (and class of medications) that caused a severe drug reaction ✔️ Help patients access essential medicines ✔️ Support patient care and public health ✔️ Give vaccines and health screenings And much more! Pharmacists who are aware of DRESS Syndrome have even been supportive in helping patients identify that they’re having a severe drug reaction. 🌟 In 2022, one of our DRESS Heroes was Pharmacist Agnes Lim. If you’ve had DRESS Syndrome or another severe drug reaction, a pharmacist can help you be sure that you’re avoiding the medicine/s that caused your reaction. For this reason, be sure to let your pharmacist know about your DRESS case and the drug that caused your reaction. Thank you to all pharmacists for your role in making sure the public has safe, informed access to medications and ongoing healthcare!

⚕️Recovering from DRESS Syndrome typically requires multiple treatment steps. The goal is to both address the symptoms and avoid later flares of symptoms through treatment and after you’ve recovered from your initial illness. A global medical community of DRESS experts have proposed best practices for treating this progressive condition. They encourage treatment in 3 phases. 👉 Phase 1: First Treatment 1. Stop taking the suspected drug. 2. Provide supportive care to reduce the pain and stress symptoms create. 3. Treat with systemic and topical steroids — can help avoid organ failure. 4. Give steroid-sparing medications and additional medications, if needed. 👉 Phase 2: Ongoing Treatment 1. Repeat blood tests if symptoms are severe (at least 2 times a week) or if you need deeper care after First Treatment. 2. Taper steroids gradually — an essential step that can help patients avoid having symptoms return and possible organ failure. 3. Manage side effects from treatment with ongoing monitoring by doctors. 👉 Phase 3: Long-Term Treatment 1. Monitor symptoms with medical team for up to 5 years (depending on your illness) to look for critical signs like organ dysfunction and viral reactivation, and auto-immune diseases. 2. Follow up with an Allergist-Immunologist to help you manage future medications and also test for genetic risks you may have with specific drugs. To read about treatment steps in more detail, visit our website: https://ow.ly/TtLx50Ttyrr

Great news! Dr. Sherrie Divito and team have won the Bright Futures Award. Their project will receive funding for essential research in drug hypersensitivity reactions like DRESS Syndrome and Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis (SJS/TEN). A huge thanks to all who voted to made this happen!

💊Taking a new medication? Be aware about the risk of severe, adverse drug reactions! People get DRESS Syndrome by developing a harmful reaction to a medication. And first symptoms typically happen between 2 to 8 weeks after starting new medication. Antibiotics, anticonvulsants, and some medications for gout and cancer can commonly cause DRESS and other hypersensitivity reactions like Stevens Johnson Syndrome (SJS). And we’re learning of more drugs that cause this devastating illness as new medications come to market. Five medications cause 50% of cases and 56% of reported deaths (marked with an asterisk below). The most common DRESS-causing drugs are: ➡️ Antibiotics - Amoxicillin - Dapsone - Minocycline* - Sulfamethoxazole/Trimethoprim (Bactrim)* - Vancomycin* ➡️ Anticonvulsants/Antiseizure - Carbamazepine* - Lamotrigine* - Phenobarbital - Phenytoin - Valproic acid - Zonisamide ➡️ Other - Allopurinol* - Mexiletine - Olanzapine - Sulfasalazine ❗If you develop a rash and a fever after taking one of these medications, work with your doctor to immediately stop taking it. Assume you are having a severe reaction until the doctor proves otherwise. 👉 Before taking a new medication: - Talk with your doctor about the risks of taking the prescribed medication. - Ask if a genetic test exists for the drug to identify if you’re at risk of developing a reaction. An Allergist-Immunologist is often who can help you with a genetic test. Being careful about the medications you take can help you prevent developing DRESS Syndrome! For a deeper list of DRESS-causing medications, visit our website: https://ow.ly/2Rft50Togzi