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Every October, Canadian Patient Safety Week reminds us of the importance of preventing harm before it happens. For rare but serious conditions like Stevens–Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN), prevention means reducing risk for everyone: by improving drug safety, recognizing early signs, and responding quickly when reactions occur. While we cannot always predict who will develop them, greater awareness can help reduce the risk.   Understanding the Risk SJS and TEN are very serious reactions to certain medications. They mostly cause blistering and peeling of the skin and the lining inside our mouths or eyes. Drugs like antibiotics and medicines for seizures are commonly associated with causing SJS/TEN. Although lots of people use these drugs safely, only a few will develop SJS/TEN. Because it's so rare, finding out who is at risk can be tough, so systems that watch for medication problems ("pharmacovigilance") are very important.   How We Learn Which Drugs Are Risky For over 50 years, doctors have reported drug reactions to large databases like the FDA Adverse Event Reporting System (MedWatch). This helps us learn which medicines carry the most risk for SJS/TEN. Collecting this information guides safer prescribing choices for doctors, pharmacists, and nurses and helps patients everywhere.   Why Risks Vary: Genetic traits and Medication Choices The risk of SJS/TEN isn’t the same for everyone. Genetic traits, such as certain HLA genes, make some people more likely to develop SJS/TEN after taking particular medications. This makes it important for healthcare providers to consider genetics whenever possible when prescribing medicines and ensure such testing is done before using medications known to cause SJS/TEN.   Recent studies have found that some antibiotics are among the most frequent causes of SJS/TEN. That's why doctors and pharmacists must use antibiotics carefully and look out for early symptoms of SJS/TEN. Learning these patterns helps improve drug safety for everyone.   Pharmacists: The Medication Experts Pharmacists play a key role in keeping patients safe from severe drug reactions. They can help figure out which drug might have caused the problem and work with your doctor to choose a safer alternative. If SJS/TEN or any drug reaction is suspected, pharmacists can review your medicines to avoid further harm and recommend options that are less likely to trigger another reaction.   Working Together for Better Prevention Preventing serious drug reactions takes teamwork: doctors, pharmacists, patients, and regulators support each other. New programs focus on catching early warning signs and acting quickly. The biggest way to prevent problems is through education, clear communication, and making sure everyone knows the risk factors.   Spotting Early Symptoms Saves Lives Early symptoms like fever, sore throat, red or irritated eyes, show up days before any blistering or peeling starts. If these appear, stopping the medication and seeking medical help immediately is crucial. Educating patients, wearing MedicAlert bracelets for drug allergies and specifically for SJS/TEN being the reaction, can help ensure you won't be given the same medication again.   When Reactions Happen: Multidisciplinary Care Sometimes, severe reactions can’t be avoided. Getting care from a team of specialists, such as skin doctors (dermatologists), eye doctors, burn care, and mental health professionals, leads to the best results. Reporting drug reactions to regulators like FDA or Health Canada afterwards helps improve medicine safety for future patients.   Conclusion Preventing SJS/TEN starts with awareness among healthcare professionals, patients, and caregivers alike. Recognizing early symptoms, reporting suspected drug reactions, and improving communication between providers and patients can make all the difference. By continuing to strengthen pharmacovigilance and collaboration across healthcare systems, we can move closer to a world where severe drug reactions are identified faster and managed more safely.   This October, during Canadian Patient Safety Week, let us remember that awareness saves lives and that prevention starts with all of us.   References Castellana E, Budau PM, Chiappetta MR. Pharmacovigilance and Stevens-Johnson Syndrome (SJS)/Toxic Epidermal Necrolysis (TEN): 55 Years of Retrospective Analysis of the FDA Adverse Event Reporting System (FAERS) Database. Hospital Pharmacy. 2025 Apr 30:00185787251337610. Phillips EJ. Defining Regional Differences in Drug-Induced SJS/TEN: A Tool to Improve Drug Safety? Clin Pharmacol Ther. 2017;102(4):589-591. https://doi.org/10.1002/cpt.1175 Yan X, Ma J, Guo C, Yang G. Association of antibiotics with Stevens-Johnson syndrome and toxic epidermal necrolysis: a real-world pharmacovigilance study. International Journal of Antimicrobial Agents. 2025 Apr 25:107524. Marks ME, Botta RK, Abe R, Beachkofsky TM, Boothman I, Carleton BC, Chung WH, Cibotti RR, Dodiuk-Gad RP, Grimstein C, Hasegawa A. Updates in SJS/TEN: collaboration, innovation, and community. Frontiers in Medicine. 2023 Oct 11;10:1213889. Shanbhag SS, Chodosh J, Fathy C, et al. Multidisciplinary Care in Stevens-Johnson Syndrome. Ther Adv Chronic Dis. 2020;11:2040622319894469. U.S. Food and Drug Administration. MedWatch: The FDA Safety Information and Adverse Event Reporting Program [Internet]. Silver Spring (MD): FDA; [cited 2025 Oct 9]. Available from: https://www.fda.gov/safety/medwatch-fda-safety-information-and-adverse-event-reporting-program

Stevens–Johnson yndrome (SJS) and toxic epidermal necrolysis (TEN) are rare, life-threatening skin reactions that can affect anyone. However, patients with darker skin tones may face unique risks, challenges, and outcomes that are often overlooked in both research and medical education.   Diagnostic Challenges in Skin of Color SJS/TEN often begins with a painful rash, blisters, and mucosal involvement. In lighter skin, these changes appear as red or dusky erythema, making them easier to identify. In contrast, on darker skin, rashes may look purple, gray, or violaceous, which can delay recognition and lead to misdiagnosis. A case report of a young Black woman illustrated how her early symptoms were mistaken for allergic reactions and conjunctivitis before SJS was correctly diagnosed¹.   Severity of Ocular Complications Patients with darker phototypes (or darker skin colours) (Fitzpatrick Scale skin types V and VI) may also be at greater risk of severe long-term eye damage after SJS/TEN. In one study, nearly 78% of patients with darker phototypes experienced profound visual impairment compared to 50% of those with lighter skin². These patients were also more likely to develop swelling and scarring of the conjunctiva, the layer of tissue that lines the inner surface of the eyelids, and corneal ulceration, leading to vision loss. Researchers suggest that this may be linked to profibrotic wound-healing processes more common in darker skin².   Genetic and Immunologic Risk Factors Genetic factors also play a role in SJS/TEN outcomes. Certain variants in patients’ genetics, such as HLA-B* 31:01, occur more frequently in some people of Asian or African ancestry and increase susceptibility to SJS/TEN and other severe skin reactions that are caused by some  medications³. In addition, systemic conditions like HIV, which disproportionately impact communities of color raise the risk of SJS/TEN.   Underrepresentation in Medical Education One of the most important challenges is the lack of representation of patients with darker phototypes (or darker skin colours) in medical education. A review of widely used textbooks and online resources found that fewer than 20% of SJS images depict patients with darker skin¹. This underrepresentation means many healthcare providers are not adequately trained to recognize how SJS presents in patients of color. As a result, diagnosis may be delayed, contributing to poorer outcomes.   Moving Forward To improve care for patients with skin of color who develop SJS/TEN, we need to: ●      Expand medical training resources to include more images of skin conditions in darker tones. ●      Recognize that ocular complications may be more severe in these patients and require close follow-up. ●      Ensure equitable access to specialist care.   Bibliography Diep D, Aluri B, Crane A, et al. Stevens-Johnson Syndrome in a Patient of Color: A Case Report and an Assessment of Diversity in Medical Education Resources.  Cureus. 2022;14(2):e22245. doi:10.7759/cureus.22245 Thore D, Delcampe A, Ingen-Housz-Oro S, et al. Dark skin phototype is associated with more severe ocular complications of Stevens–Johnson syndrome and toxic epidermal necrolysis.  Br J Dermatol. 2019;181(1):212–213. doi:10.1111/bjd.17627 Cheng L. Current Pharmacogenetic Perspective on Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis. Front Pharmacol. 2021 Apr 26;12:588063. doi: 10.3389/fphar.2021.588063. PMID: 33981213; PMCID: PMC8107822.

Stevens–Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) are rare but devastating drug reactions that can quickly escalate from flu-like symptoms to widespread skin detachment and mucosal damage. Survivors often face long-term complications such as vision impairment, chronic pain, and emotional trauma. That is why August is recognized worldwide as SJS Awareness Month, with SJS Awareness Day on August 18. It is a time to share stories, honor those we have lost, and advocate for better recognition, earlier diagnosis, and comprehensive care. Why Awareness Makes a Difference Despite their severity, SJS/TEN remain underrecognized by the public and even some healthcare professionals. Increasing awareness is key to improving outcomes: ● Early diagnosis saves lives. Initial symptoms such as fever, sore throat, red eyes, or a rash are often mistaken for common viral illnesses. Awareness can help patients, families, and clinicians recognize the signs earlier and intervene before complications worsen. ● Survivors need long-term care. Many survivors face chronic ocular issues, skin sensitivity, fatigue, and post-traumatic stress. Increased awareness helps validate these experiences and supports access to multidisciplinary follow-up. ● Lack of awareness harms trust. Survivors have described feeling confused and dismissed by healthcare providers unfamiliar with SJS/TEN. Recent research emphasizes the need for clinicians to recognize not just the physical signs, but also the psychological impact of the condition. “ As a survivor, I know first-hand the fear and isolation this condition brings. SJS awareness matters because early recognition can save lives, and understanding can save dignity. Awareness means fewer people will suffer in silence, more will get timely care, and patients and survivors will have the support they need to heal. ” Sonia Whyte-Croasdaile, SJS/TEN Survivor How You Can Get Involved You do not need to be a survivor or clinician to take part in SJS Awareness Month. Small actions can make a big difference: ● Wear blue on August 18 to support SJS Awareness Day. ● Share facts or survivor stories to help raise awareness and make survivors’ voices heard. ● Follow us on social media at sjs.canada on Instagram and Stevens-JohnsonSyndromeCanada and spread awareness by using hashtags like #SJSawareness, #GlowingBlueforSJS, or #ShadesforSJSAwareness. ● Support advocacy organizations by participating in virtual campaigns or spreading educational resources. ● Become a SJS Canada volunteer and help expand reach and impact. ● Support an event! All are free and virtual! Find out more information at: https://www.sjscanada.org/sjs-events Looking Ahead: Strengthening Advocacy and Care While progress has been made in acute care protocols, ongoing gaps remain: ● More research is needed to better understand genetic risk factors, pathophysiology, and effective therapies. ● Access to long-term multidisciplinary care is essential. This includes dermatology, ophthalmology, pain specialists, and mental health support, which are not always readily accessible to patients. ● Education within healthcare systems is critical. Increasing awareness among providers improves recognition, referral pathways, and survivor support. Conclusion SJS/TEN are rare, but for those affected, their impact is lifelong. Awareness Month is more than a calendar event. It is a global effort to educate, prevent, and support. Whether you are sharing a post, wearing blue, or learning something new, your voice helps make SJS/TEN visible. This August, let us shine a light on SJS/TEN and ensure no one faces it alone. References 1. O’reilly P, Walsh S, Bunker CB, Ryan S, Natella PA, Colin A, Simpson J, Barry LA, Meskell P, Dodiuk-Gad R, Coffey A. The quality-of-life impact of Stevens–Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) on patients’ lives: an interpretative descriptive qualitative study. British Journal of Dermatology. 2025 Jan;192(1):85-91. 2. SJS Canada. SJS Awareness Day. https://www.sjscanada.org/sjs-awareness-day 3. Stevens–Johnson Syndrome Foundation. SJS Awareness Month. https://sjsupport.org/?page_id=449

Stronger Than the Storm of SJS/TEN: A Nurse Educator’s Survival, Faith, and Renewal Karen Worthy, Ph.D., MPH, RN, CNE, CNEcl University of South Carolina, College of Nursing Professor   On January 25, 2020, Dr. Karen Worthy initially believed she was coming down with the flu. The familiar fever, cough, and muscle aches mirrored symptoms she had experienced the year before. But as the day wore on, her condition rapidly changed. New, alarming symptoms emerged—signals that this was not the flu at all, but something far more serious. She was facing a medical emergency.   I got really sick at work; I just did not feel well. The following day, I felt worse, so I decided to go to a clinic at the local pharmacy. I thought they would just give me medication for the flu, such as an antiviral medication, such as Tamiflu, a cough suppressant, and maybe a decongestant, and that things would be just fine,” said Dr. Worthy. “During my assessment, the nurse practitioner stated I had a fever of 104°F, and she was looking very concerned. And then she said that my face was beginning to swell right before her eyes. An emergency was unfolding, and time could be the difference between life and death.”   Dr. Worthy was transported by ambulance to a local hospital in Columbia, SC, where her condition deteriorated rapidly. Her face was becoming more edematous, and her lips and skin began to blister. Due to the risk for airway closure, she was also facing the likelihood of intubation. Even as they worked on emergency treatment options, there was one thing Dr. Worthy and her healthcare team had yet to figure out: What exactly were they treating? There was no definitive diagnosis.   “The doctors did not immediately recognize what medical condition I had developed but knew it was atypical and life-threatening. They quickly formed an interdisciplinary team including specialists from Intensive Care, Emergency Medicine, Dermatology, and Internal Medicine to care for me and my rare condition. My daughter, Dr. Ja’Pel Sumpter, MD, MPH was there as well; they included her in their discussions and treatment plans.” “Ultimately, it was the dermatologist who diagnosed my condition as Stevens-Johnson syndrome,” Dr. Worthy said. The diagnosis proved to be a crucial step in prescribing the proper treatment as quickly as possible.   Stevens-Johnson syndrome (SJS) was the correct diagnosis; however, SJS is on a continuum with the more severe, toxic epidermal necrolysis (TEN). They are no longer considered separate conditions but SJS/TEN. SJS/TEN is a severe skin reaction most often triggered by particular medications, including sulfur drugs, seizure medications, and non-steroidal anti-inflammatory drugs (NSAIDs) called oxicams. In many cases, the exact cause is never definitively determined as in Dr. Worthy’s case.  It could have been something as simple as an over-the-counter pain reliever or fever reducer medication she had taken just two days before her hospitalization.   SJS/TEN is a rare disease, affecting 1 to 2 per million people each year, with SJS being more common than TEN. When more than 30% of the total body surface area (TBSA) is affected, the patient is on the more severe end of the SJS/TEN continuum, with a 25-35% mortality rate. This condition not only ravages the epithelial tissues of the body but leaves the patient susceptible to infection, multi-organ system failure, and other life-threatening complications. For this reason, it is imperative that individuals affected by SJS/TEN are treated at a multi-disciplinary burn center with the requisite experience to treat this complex condition.   Immediately after the diagnosis of SJS, on January 26, 2020, Dr. Worthy was transferred to the Joseph M. Still Burn Center at Doctors Hospital in Augusta, GA, where in the past year alone, more than 100 cases of SJS/TEN were treated. Dr. Worthy was where she needed to be to receive the necessary treatment to save her life.   Dr. Worthy’s daughter, Ja’Pel, recalls, “Dr. Mullins was the first person I talked to when I arrived at the Burn Center. He brought me into a room and told me the prognosis and exactly what to expect, and an estimated timeframe of how long she would be in the hospital. He was absolutely amazing, and any time I had any questions, he was always more than willing to discuss any questions I had. You could tell from his humble disposition and compassion that he was made for this job. There aren’t many people who can build such a rapport the way he could with his patients and their families. My mother always said, that in life, but especially in healthcare, people don’t care how much you know until they know how much you care. He definitely got me through the initial shock of everything.”   Living in North Carolina at the time, Ja’Pel had never been to Augusta and had nothing with her but an overnight bag. She was alone in a strange city.  After getting her mother admitted, by the time she left the Burn Center to look for a place to stay, it was 3:00 in the morning. That’s when the Burn Foundation of America intervened and offered Ja’Pel a room in the Chavis House which offers free lodging and daily meals for family members and loved ones of patients in the Burn Center during the extent of their stay and recovery period.   “The Chavis House was an absolutely amazing resource to have for people like me who have no local family and are there alone. I had never been to Augusta, nor did I know anyone there, but I quickly started building relationships with the other family members. We stayed in the house together, prayed together, and we would check on each other daily to make sure everyone was okay. We became each other's support system.  So much was going on with my mother’s care until I need to be close by.  Living at the Chavis House made it so easy for me to just walk to the hospital if needed. It was literally across the street from the hospital, so if anything happened, I could immediately return to the hospital,” said Ja’Pel. “It was a very trying time, but it also rebuilt my faith in humanity.”   Dr. Worthy and Ja’Pel were in Augusta for an entire month. During that time, Dr. Worthy experienced extensive physical and medical changes. Her outward appearance and her overall health changed as SJS/TEN ran its course.   “SJS/TEN causes the body to go through a complete regeneration,  and you can’t stop that process. My skin sloughed off in several areas of my body. I had to have two skin graft surgeries. My nails detached and fell off. I became legally blind in my right eye. I was intubated and on the ventilator for approximately two weeks to protect my airway”, she said.   The toll SJS/TEN took on her was extensive. Her eyesight deteriorated. Her shoulder-length hair had to be shaved off in the treatment process. Her skin both looked and felt different, with a new sensitivity to direct sunlight. But none of that mattered to Dr. Worthy. When she looked in the mirror, she saw a different Karen on the outside, but she knew what made her who she was and what she stood for remained the same. She was grateful and appreciative of every day.   “I know that people love their hair, and I loved my hair at the time, but it’s okay because your hair will grow back…your skin will regenerate…your vision will get better. And, as I shared with many people about those features, it will all get better over time or perhaps, it will not. If my hair does not grow back, I’ll wear a hair system or wig.  If my vision does not improve, I’ll wear corrective lenses. If my skin doesn’t regenerate properly, there are many dermatological interventions I can explore. I know who I am, and I know the journey I have traveled.  These physical aesthetics are not important to me. My family and I will move forward from today. Every day is like the first day of the rest of my life.  It’s all a blessing; I am blessed! ”said Dr. Worthy.   “My mom is a real trooper,” said Ja’Pel. “Once she was extubated, we actually got her out of bed that same day. She was very motivated. Because of her nursing background, knowledge, and skills, she knew the importance of ambulation as foundational for beginning her recovery process.”   Although SJS/TEN resulted in many changes to Dr. Worthy’s body, some things remained the same. These are the essence of who she is and why she is loved and respected by many. No matter what the trials, Dr. Worthy is steadfast in her faith in God, her love of family and friends, her positive spirit, and her nurse’s intuition. She states, “This was the process I had to go through, and nothing could stop or alter that process. Through God’s unwavering grace, the prayers and love of my family and friends, and the skill and knowledge of my medical team, today, my skin has regenerated, my vision is 20/20 bilaterally without corrective lenses, and I walk over a mile a day.  I do not take credit for my progress—I give all the glory to My God Almighty.”   Five years seems like ages ago now. As a nurse and a professor educating future nurses, she is in the right place and profession.  She is so proud and thankful for all the nurses who were and still are a part of her SJS/TEN journey.   “I would not have chosen a different profession. Nursing is embedded in the core of my heart and soul. I am passionate about nursing, education, and my students as we are educating future nurse leaders, stewards of the community, and future researchers. We are phenomenal providers and a vital part of the interdisciplinary healthcare team. My family and I could not have asked for a better experience during such an unexpected, vulnerable time.  As nurses, their compassionate prayers along with genuine acts of kindness and caring (i.e., therapeutic touch, smiles, kind words, etc.) enhanced a positive outcome. We are the heart of healthcare!”   Dr. Worthy further reflects, “Before developing SJS/TEN, I had never been admitted in the hospital, never really been sick, no diagnosis of diabetes or hypertension, or any other comorbidities. I ran two miles every day. I didn’t have any health issues. To this day, my providers still do not know what caused my condition.”   Given my health and the life I lead, I often hear people say, ‘Well, you must have asked God a million times why you?’ Never. Not once did I ever ask God why me. I asked Him, ‘Why not me?” I know everything happens for a reason, and this challenge only strengthened my faith in God as I remain thankful for all my many blessings.   I am grateful to have survived SJS/TEN, and I am a stronger, more purpose-driven Karen because of it.  Afterall, “I’m a NURSE! What’s your superpower?”   Helpful Links   Learn more about the Burn Foundation of America . Read more about Stevens-Johnson syndrome and TEN . Explore more ways BRCA supports patients and their families .

Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) are rare but extremely serious conditions often triggered by medications. These severe drug reactions can cause widespread skin detachment and mucosal damage, resembling second-degree burns. However, what many people don’t realize is that SJS and TEN affect far more than just the skin. These conditions can damage multiple internal organs, making treatment complex and demanding. That’s where a multidisciplinary team comes in. In the early stages of SJS/TEN, identifying and discontinuing the causative drug is the most urgent priority. Once this is done, patients need immediate transfer to a specialized burn center or intensive care unit, where they can receive care from a coordinated team of medical professionals. This multidisciplinary approach has become the cornerstone of modern SJS/TEN management. Why a Team Approach Matters SJS/TEN can impact the lungs, gastrointestinal tract, liver, kidneys, eyes, genitalia, and more. Because no single doctor can manage all these complications alone, an effective team often includes: Dermatologists to diagnose and monitor the skin reaction. Burn surgeons and wound care nurses  to manage the open skin lesions like burn wounds. Ophthalmologists to address eye involvement, which can lead to scarring or vision loss if untreated. Gynecologists or urologists  to treat mucosal involvement in the genital or urinary tracts. Internal medicine specialists and intensivists  to monitor and manage systemic symptoms, fluid balance, infections, and organ support. Dieticians  to ensure adequate calorie and protein intake during the body’s healing process. Psychologists and social workers  to support patients’ mental health and recovery. Pharmacists to assist in identifying the causative drug, recommending safe alternatives, and managing complex medication regimens during recovery.   According to Canadian and international studies, patients managed in burn units by teams that include dermatologists, intensivists, plastic surgeons, and others have better outcomes—including lower mortality and fewer long-term complications. What Does Care Look Like in Practice? In the hospital, the team will work together to monitor for and prevent complications. Burn nurses provide gentle dressing changes with non-stick materials that don’t damage fragile healing skin. Pain specialists help manage the significant discomfort that patients experience. Ophthalmologists might use lubricating eye drops or perform procedures to prevent long-term eye damage. Internists carefully balance IV fluids, electrolytes, and nutrition while watching for infections, organ dysfunction, and sepsis. Each specialty plays a unique but interconnected role. Without this coordination, vital complications—such as respiratory issues or genital scarring—can go unnoticed or untreated. Unfortunately, many SJS/TEN survivors who do not receive comprehensive care report long-term complications like vision loss, sexual dysfunction, chronic fatigue, and emotional trauma. What Happens After Hospital Discharge? Recovery from SJS/TEN doesn’t end when the skin heals. Survivors often face physical, emotional, and psychological challenges. A multidisciplinary follow-up team may include dermatology, ophthalmology, psychiatry, and physical therapy. Patients may also need ongoing wound care and rehabilitation. That’s why education, communication, and long-term planning are essential parts of the discharge process. Conclusion SJS and TEN are not just skin diseases—they are complex, systemic conditions that require more than a one-size-fits-all approach. A multidisciplinary team is essential not only for survival during the acute phase, but also for minimizing long-term complications and restoring quality of life. Whether it’s saving someone’s sight, preventing kidney failure, or supporting mental health, each team member plays a crucial role. Together, they make the difference between surviving SJS/TEN—and truly healing from it.     REFERENCES 1. Martinez Villarreal, J. D., Cardenas-de la Garza, J. A., Ionescu, M. A., et al. (2025). Stevens‐Johnson Syndrome and Toxic Epidermal Necrolysis: A Review of Current Management and Innovative Therapies . International Journal of Dermatology, 64(7), 1164–1172. https://doi.org/10.1111/ijd.17768 2.  Surowiecka, A., Barańska-Rybak, W., & Strużyna, J. (2023). Multidisciplinary Treatment in Toxic Epidermal Necrolysis . International Journal of Environmental Research and Public Health, 20(3), 2217. https://doi.org/10.3390/ijerph20032217 3. Papp, A., Sikora, S., Evans, M., et al. (2018). Treatment of Toxic Epidermal Necrolysis by a Multidisciplinary Team: A Review of Literature and Treatment Results . Burns, 44(4), 807–815. https://doi.org/10.1016/j.burns.2017.10.022 4. Shanbhag, S. S., Chodosh, J., Fathy, C., et al. (2020). Multidisciplinary Care in Stevens-Johnson Syndrome . Therapeutic Advances in Chronic Disease, 11, 2040622319894469. https://doi.org/10.1177/2040622319894469

Stevens–Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) are two names you may have seen used together, and for good reason. These conditions are rare, severe skin reactions often triggered by medications or infections. They share many symptoms and treatments, which is why they’re often grouped as “SJS/TEN.” The main difference lies in the extent of skin detachment, which reflects the severity of the condition at the time of diagnosis.   Let’s break it down.   It All Comes Down to Skin Involvement   The difference between SJS and TEN is how much of the body’s skin surface is affected: ●      SJS is diagnosed when less than 10% of the body’s surface area has skin detachment (like blisters or peeling). ●      TEN is diagnosed when more than 30% of the skin is involved. ●      Cases that fall between 10–30% are called SJS/TEN overlap.   This matters because the more skin that’s affected, the higher the risk of serious complications like infections, dehydration, and organ damage. TEN has a much higher mortality rate than SJS because of how widespread the damage can be.   Similar Causes, Similar Symptoms   Both SJS and TEN are considered severe drug reactions in most cases. Common culprits include antibiotics (like sulfa drugs) and seizure medications. Symptoms often start with flu-like feelings (fever, sore throat, body aches) followed by painful rashes, blistering, and sloughing of the skin and mucous membranes (such as the mouth, eyes, or genitals).   Patients may be treated in burn units because the damage resembles severe burns. Treatment focuses on stopping the medication that triggered the reaction, controlling symptoms, and preventing infection. Supportive care is crucial, and for TEN in particular, the need for intensive care is often urgent.   What Makes TEN So Dangerous?   While SJS and TEN are different points on the same spectrum, the degree of skin detachment has important clinical implications. When over 30% of the skin barrier is compromised, the body becomes vulnerable to life-threatening infections, severe fluid loss, and temperature regulation problems. In fact, some studies report mortality rates for TEN as high as 30–50%, compared to 5–10% for SJS.   There’s also a higher likelihood of systemic involvement, such as lung, kidney, and liver damage, in TEN patients. That’s why early diagnosis and transfer to a specialized care unit is critical.   How Do Doctors Tell Them Apart?   Doctors use something called the body surface area (BSA) rule, which is borrowed from burn medicine, to classify the condition. They also pay attention to the speed of progression, the presence of mucosal involvement (which is nearly always affected), and lab markers that can predict severity.   One widely used tool is the SCORTEN score, which helps estimate the severity of illness based on several factors including age, heart rate, and the extent of skin detachment. The higher the score, the higher the risk, especially in TEN.   Why This Distinction Matters   Knowing whether someone has SJS or TEN, affects the care people receive from hospital triage to follow-up treatment. It can influence: ●      What kind of unit the patient is transferred to (burn unit, ICU, etc.) ●      What specialists are involved (dermatologists, ophthalmologists, infectious disease experts) ●      What kinds of long-term issues to monitor for (like vision problems or psychological trauma) It also helps researchers better understand how to improve treatments and outcomes. Most importantly, it allows survivors and their families to find resources and support tailored to their experience.   The Takeaway   SJS and TEN are part of the same spectrum, but they aren’t identical. The key difference surrounds how much skin is affected, and shapes the risk, the treatment, and the recovery. Knowing the distinction helps patients get the care they need, faster.   And whether it’s 10% or 90% of the skin, both SJS and TEN are serious conditions that deserve compassion, awareness, and support far beyond the hospital walls.   References Frantz R, Huang S, Are A, Motaparthi K. Stevens–Johnson syndrome and toxic epidermal necrolysis: a review of diagnosis and management. Medicina. 2021 Aug 28;57(9):895. Zimmerman D, Dang NH. Stevens–Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) immunologic reactions. Oncologic Critical Care. 2020:267-80. Hama N, Aoki S, Chen CB, Hasegawa A, Ogawa Y, Vocanson M, Asada H, Chu CY, Lan CC, Dodiuk-Gad RP, Fujiyama T. Recent progress in Stevens–Johnson syndrome/toxic epidermal necrolysis: diagnostic criteria, pathogenesis and treatment. British Journal of Dermatology. 2025 Jan;192(1):9-18. Shah H, Parisi R, Mukherjee E, Phillips EJ, Dodiuk-Gad RP. Update on Stevens–Johnson syndrome and toxic epidermal necrolysis: diagnosis and management. American Journal of Clinical Dermatology. 2024 Nov;25(6):891-908. Wasuwanich P, So JM, Chakrala TS, Chen J, Motaparthi K. Epidemiology of Stevens-Johnson syndrome and toxic epidermal necrolysis in the United States and factors predictive of outcome. JAAD international. 2023 Dec 1;13:17-25.

Most people have never heard of Stevens–Johnson Syndrome (SJS) or Toxic Epidermal Necrolysis (TEN). These are rare but very serious skin reactions, usually caused by medications. They can cause painful rashes, skin peeling, and damage to the eyes, mouth, and other parts of the body. Many people with SJS/TEN end up in the hospital for weeks or even months. But what happens after the hospital stay? Surviving SJS/TEN is a huge victory—but for many, it’s just the beginning of another difficult journey. The emotional impact of this illness is often overlooked. People may seem physically better on the outside, but inside, they are still struggling. In fact, research shows that over 50% of survivors experience depression, nearly half have anxiety, and many suffer from post-traumatic stress disorder (PTSD). These numbers are much higher than what we see in the general population. Many survivors are left feeling afraid—afraid of getting sick again, afraid of taking new medications, and afraid of being misunderstood. For many individuals, even years later, seeing their scars brings back painful memories, and many avoid medications altogether out of fear. A recent study also found that many survivors never receive clear answers about their illness. Nearly 90% had questions that were never addressed, and most said their doctors didn’t fully understand how SJS/TEN had changed their lives. Even fewer had access to a mental health provider who could help them process the trauma. This needs to change. This Mental Health Awareness Month, we want to shine a light on the mental health side of SJS/TEN. Recovery isn’t just about healing the skin. It’s about helping people feel safe, supported, and heard. Survivors of SJS/TEN deserve more than survival. They deserve to live well—and that includes emotional healing, mental health care, and answers to their questions. If you or someone you know has been through SJS/TEN, please know: you’re not alone. Your fears are valid. Your story matters. And support is out there.     References Hoffman M, et al. Long-term physical and psychological outcomes of Stevens-Johnson syndrome/toxic epidermal necrolysis.  JAMA Dermatology. 2021;157(6):712–715. O’Reilly P, et al. The psychological impact of Stevens–Johnson syndrome and toxic epidermal necrolysis on patients’ lives: a Critically Appraised Topic.  British Journal of Dermatology. 2020;183:452–461. Coromilas AJ, et al. Physical and mental health impact of Stevens-Johnson syndrome/toxic epidermal necrolysis and post-hospital discharge care: Identifying practice gaps.  JAAD International. 2023;11:88–89. JEADV. Patients’, family members’ and healthcare practitioners’ experiences of Stevens–Johnson syndrome and toxic epidermal necrolysis: a qualitative descriptive study. Journal of the European Academy of Dermatology and Venereology. 2021;35:e232.

Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) are rare but severe conditions that affect many parts of the body such as the skin, eyes, and internal organs. While the focus is often on the critical, life-threatening stage in the hospital, it’s important to also talk about what happens after someone survives. Recovery from SJS/TEN can be long, unpredictable, and different for everyone. Let’s walk through what we know about healing after SJS/TEN—from hospital discharge to long-term mental and physical health. The Road from the Hospital to Home Patients with SJS/TEN are often treated in burn centers because their skin damage is similar to burn injuries. But what happens when they leave the hospital? A study by Richard  et al. looked at how burn units treat SJS/TEN and found that treatment varies a lot depending on the hospital and doctors involved. There are no strict, one-size-fits-all rules for recovery, and this means that some patients may not get consistent follow-up care or support after they leave. Discharge from the hospital doesn’t mean someone is fully healed. It just means their most dangerous symptoms—like skin blisters/burns and infection—are under control. The healing process may continue at home and can take months or even years. Physical Recovery: More Than Just Skin-Deep After surviving SJS/TEN, patients often live with visible scars and long-term damage. One common issue is chronic eye disease. According to researchers, many people develop dry eyes, scarring inside the eyelids, and even blindness without proper eye care. Some patients have surgery to help protect the eyes early on, but results vary. Other physical effects can include: ●      Skin that blisters or burns easily ●      Painful joints and fatigue ●      Trouble eating due to mouth or throat damage Even when the outer skin looks healed, the inside of the body may still be dealing with inflammation and immune responses. In fact, studies show that people who’ve recovered from SJS/TEN still have strong immune system “memories” of the event—certain immune signals like IFN-γ (a protein involved in inflammation) stay elevated for years. Mental Health After SJS/TEN Healing isn’t just physical—it’s emotional too. A survey of SJS/TEN survivors, conducted by DeNiro et al. , found that many people experience psychological trauma long after they leave the hospital. Some of the most common issues include: ●      Anxiety and depression ●      Post-traumatic stress disorder (PTSD) ●      Fear of using medications again Many survivors feel isolated or misunderstood because of how rare the condition is. Talking to mental health professionals, joining support groups, and staying connected with doctors can make a big difference. Why Consistent Follow-Up Matters One big takeaway from all the studies is that there’s no universal plan for helping people recover from SJS/TEN. An article by Kumar et al.  called on doctors to “look beyond the guidelines” and really listen to each patient’s needs after the hospital stay. This includes: ●      Creating personalized follow-up plans ●      Referring patients to specialists like eye doctors or mental health professionals ●      Educating patients and families about what symptoms to watch for Because the effects of SJS/TEN can pop up months or years later, it’s important for survivors to check in regularly with their healthcare team—even if they feel okay. Moving Forward After SJS/TEN SJS/TEN recovery is a long journey, and no two people experience it the same way. While the first goal is surviving the initial illness, the second—and just as important—goal is helping survivors live healthy, full lives afterward. Whether it's managing vision problems, dealing with scars, or getting support for mental health, everyone deserves care that treats the whole  person, not just their skin. References Richard EB, Hamer D, Musso MW, Short T, O’Neal Jr HR. Variability in management of patients with SJS/TEN: a survey of burn unit directors. Journal of Burn Care & Research. 2018 Jun 13;39(4):585-92. De Rojas MV, Dart JK, Saw VP. The natural history of Stevens–Johnson syndrome: patterns of chronic ocular disease and the role of systemic immunosuppressive therapy. British journal of ophthalmology. 2007 Aug 1;91(8):1048-53. Fu M, Gao Y, Pan Y, Li W, Liao W, Wang G, Li C, Li C, Gao T, Liu Y. Recovered patients with Stevens–Johson syndrome and toxic epidermal necrolysis maintain long-lived IFN-γ and sFasL memory response. DeNiro KL, Honari S, Hippe DS, Dai A, Pham TN, Caceres M, Mandell SP, Duong PQ, McMullen KA, Gibran NS. Physical and Psychological Recovery Following Toxic Epidermal Necrolysis: A Patient Survey. Journal of Burn Care & Research. 2021 Nov 1;42(6):1227-31. Kumar R, Das A, Das S. Management of Stevens-Johnson syndrome-toxic epidermal necrolysis: looking beyond guidelines!. Indian journal of dermatology. 2018 Mar 1;63(2):117-24.

Stevens-Johnson Syndrome (SJS) is a rare but serious medical condition that primarily affects the skin and mucous membranes. While SJS can occur at any age, many cases commonly occur in children and younger adults. Although rare, the impact of SJS on a child’s health can be life-threatening, making awareness and early intervention critical. Causes and Triggers of SJS in Children One of the primary causes of SJS in children is an adverse reaction to medications. Studies have identified several drugs commonly linked to SJS, including: ●      Antibiotics (e.g., penicillins, sulfonamides, cephalosporins) ●      Anticonvulsants (e.g., carbamazepine, lamotrigine, phenytoin, phenobarbital, valproic acid) ●      Nonsteroidal anti-inflammatory drugs (NSAIDs) (e.g., ibuprofen, naproxen) In addition to medications, SJS can also be caused by infections, particularly Mycoplasma pneumoniae , a bacterial infection that affects the lungs. Viral infections such as herpes simplex and influenza have also been associated with cases of SJS in children. Symptoms and Diagnosis SJS typically presents with vague symptoms, making early diagnosis challenging. It often starts with flu-like symptoms and some early warning signs include: ●      Fever and body aches ●      Painful blisters in the mouth, nose, eyes, and genitals ●      Red or purplish skin rashes that spread quickly ●      Peeling or sloughing of the skin ●      Eye redness and irritation, which can lead to long-term vision problems Since these symptoms can be mistaken for other illnesses, doctors may use a combination of clinical evaluation and skin biopsy to confirm the diagnosis. Treatment Options for Children with SJS There is no single cure for SJS, so treatment focuses on stopping the progression, managing symptoms, and preventing complications. The key steps include: Discontinuing the Trigger  – If a medication is identified as the cause, it should be stopped immediately under medical supervision. Hospitalization  – Most children with SJS require admission to specialized units, such as burn centers or intensive care units, for close monitoring and treatment. Supportive Care  – Management includes pain control, wound care, intravenous fluids, and nutritional support to promote healing and prevent complications. Medication Therapy  – Cyclosporine has shown greater effectiveness in reducing disease severity compared to intravenous immunoglobulin (IVIG) and corticosteroids, which are not generally recommended. Specialist Care  – Given the multisystem involvement of SJS, early consultation with ophthalmologists, urologists, and gynecologists is essential to prevent complications such as lacrimal duct scarring, urethral and vaginal strictures, and long-term functional impairments. Complications and Long-Term Effects Even after recovery, many children experience long-term complications from SJS, including: ●      Chronic eye problems (dryness, scarring, vision loss) ●      Skin sensitivity and scarring ●      Psychological distress, such as anxiety or post-traumatic stress disorder (PTSD) Preventing SJS in Children Since SJS is mostly caused by drug reactions, careful medication use is crucial. If a child has had SJS in the past, avoiding the suspected medication and its drug class with a similar chemical structure is essential. Some genetic tests may help predict SJS risk in certain populations. Raising Awareness for a Rare but Serious Condition Although SJS is rare, its effects can be devastating. Awareness among parents, doctors, and caregivers can lead to earlier diagnosis and better outcomes. Understanding the signs, causes, and treatments is essential. Additionally, HLA genetic testing for drugs with strong associations can help identify at-risk individuals, enabling preventive strategies and reducing the incidence of SJS in children. References Del Pozzo-Magana BR, Lazo-Langner A, Carleton B, Castro-Pastrana LI, Rieder MJ. A systematic review of treatment of drug-induced Stevens-Johnson syndrome and toxic epidermal necrolysis in children. J Popul Ther Clin Pharmacol. 2011 Mar 21;18(1):121-33. Ferrandiz-Pulido C, Garcia-Patos V. A review of causes of Stevens–Johnson syndrome and toxic epidermal necrolysis in children. Archives of disease in childhood. 2013 Dec 1;98(12):998-1003. Forman R, Koren G, Shear NH. Erythema multiforme, Stevens-Johnson syndrome and toxic epidermal necrolysis in children: a review of 10 years’ experience. Drug safety. 2002 Nov;25:965-72. Lucia L, Silvia C, Paolo B, Roberto B, Fabio C, Francesca S, Francesca M, Giuseppe C, Fabrizio F, Carlo C. Clinical features, outcomes and treatment in children with drug induced Stevens-Johnson syndrome and toxic epidermal necrolysis. Acta Bio Medica: Atenei Parmensis. 2019;90(Suppl 3):52. White KD, Abe R, Ardern-Jones M, Beachkofsky T, Bouchard C, Carleton B, et al., SJS/TEN 2017: Building Multidisciplinary Networks to Drive Science and Translation. J Allergy Clin Immunol Pract. 2018 Jan-Feb;6(1):38-69. Chang WC, Abe R, Anderson P, Anderson W, Ardern-Jones MR, Beachkofsky TM, Bellón T, et al., SJS/TEN 2019: From science to translation. J Dermatol Sci. 2020 Apr;98(1):2-12.

Every February, Rare Disease Month brings attention to conditions that affect only a small percentage of the population. Although these diseases are rare, they still have a devastating impact on the lives of those affected. One such condition is Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN)—two rare but severe skin reactions that require urgent medical care.  While SJS/TEN is life-threatening, it remains largely unknown to the public and even under-recognized in the medical community. This lack of awareness contributes to delayed diagnoses, mismanagement, and a struggle for adequate research funding. This Rare Disease Month, we’re shedding light on the importance of recognizing and supporting those affected by SJS/TEN.  How Rare is SJS/TEN?  SJS/TEN is one of the rarest life-threatening medical emergencies, affecting an estimated 1 to 2 people per million per year. Despite its rarity, the condition has a high mortality rate, with up to 35% of TEN cases being fatal, and patients often face lifelong complications.  Unlike many rare diseases that are present from birth, SJS/TEN can happen to anyone at any time. It is most often triggered by medications, including antibiotics, anticonvulsants, and allopurinol. Because SJS/TEN does not have a single genetic or hereditary cause, it is impossible to predict who will develop it, making prevention challenging.  Another alarming aspect of SJS/TEN’s rarity is the limited experience many doctors have in diagnosing it. Since the condition is so uncommon, many cases are initially misdiagnosed as common viral infections, allergies, or other skin conditions, leading to delays in stopping the triggering medication, which is a key factor in survival.  The Hidden Challenges of Rare Diseases  Being diagnosed with any rare disease can feel isolating, and SJS/TEN is no exception. The rarity of the condition creates several challenges for patients and healthcare providers, including:  1. Delayed Diagnosis and Treatment Since most doctors do not encounter cases of SJS/TEN often, early symptoms like fever, sore throat, and eye irritation are often mistaken for another condition. By the time the skin symptoms appear, the condition has already progressed, making early intervention difficult.  2. Limited Research and Awareness  Compared to other diseases, SJS/TEN research receives little funding. Since the disease is rare, clinical trials are limited, making it harder to find effective treatments. More research is needed to:  ● Identify better treatment options beyond supportive care.  ● Develop early warning tests for those at risk.  ● Improve long-term rehabilitation and mental health support for survivors. 3. Lifelong Health Complications  For those who survive SJS/TEN, the journey does not end with recovery. Many patients experience permanent complications, including:  ● Chronic eye problems, including severe dry eye, scarring, and even blindness. ● Skin sensitivity and scarring, sometimes leading to disfigurement.  ● Psychological distress, including PTSD and anxiety, due to the traumatic experience.  These long-term effects make post-recovery support essential, yet few resources exist to help survivors reintegrate into their daily lives.  Looking Ahead: Hope for the Future  While SJS/TEN remains rare, there is hope for better prevention, treatment, and awareness. Advances in pharmacogenetics have already identified genetic markers—such as HLA-B*1502—that can help predict a person’s risk of developing SJS/TEN when taking certain medications.  Additionally, increased research into drug safety and adverse reactions has the potential to reduce the number of new cases. By implementing stronger screening measures and improving early recognition, fewer people may develop SJS/TEN in the future.  However, more work still needs to be done. Advocacy efforts by patients, healthcare providers, and researchers are essential to ensuring that SJS/TEN is properly recognized, diagnosed early, and treated with urgency. Why Rare Disease Awareness Matters  SJS/TEN may be rare, but for those affected, it changes everything. This Rare Disease Month, we encourage people to take a moment to learn about SJS/TEN, support rare disease research, and help amplify the voices of those living with conditions that often go unnoticed.  The more we educate, advocate, and support those with rare diseases, the closer we come to a world where no one faces these conditions alone.  REFERENCES  Marks, M. E., Botta, R. K., Abe, R., Beachkofsky, T. M., Boothman, I., Carleton, B. C., ... & Phillips, E. J. (2023). Updates in SJS/TEN: collaboration, innovation, and community. Frontiers in Medicine, 10 , 1213889.  Harr, T., & French, L. E. (2010). Toxic epidermal necrolysis and Stevens-Johnson syndrome. Orphanet Journal of Rare Diseases, 5 (1), 39.  Desai, S., Yasmeen, N., Amgoth, N., Rama Rao, A., Vidhya, B., & Ragaswetha, J. (2022). A glance on medication triggered rare disease—Stevens Johnson syndrome as global challenge in healthcare system. Impending Inquisitions in Humanities and Sciences (ICIIHS-2022) , 484-486.  Cavero-Carbonell, C., Gimeno-Martos, S., Gras-Colomer, E., Páramo-Rodríguez, L., Alfaro, A., & Zurriaga, O. (2016). Stevens-Johnson Syndrome: identification of the risk factors in a rare disease. European Journal of Public Health, 26 (Suppl 1), 376.  Rzany, B., Mockenhaupt, M., Baur, S., Schröder, W., Stocker, U., Müller, J., & Schöpf, E. (1996). Epidemiology of Erythema Exsudativum Multiforme Majus, Stevens-Johnson Syndrome, and Toxic Epidermal Necrolysis in Germany (1990-1992): Structure and Results of a Population-Based Registry. Journal of Clinical Epidemiology, 49 (7), 769-773.  Lee, H. Y., Walsh, S. A., & Creamer, D. (2017). Long-term complications of Stevens-Johnson syndrome/toxic epidermal necrolysis (SJS/TEN): the spectrum of chronic problems in patients who survive an episode of SJS/TEN necessitates multidisciplinary follow-up. British Journal of Dermatology, 177 (4), 924-935.

What Exactly is Stevens-Johnson Syndrome? Stevens-Johnson Syndrome (SJS) is a rare but serious disorder affecting the skin and mucous membranes, often triggered by a reaction to medication or infection. This condition causes the skin to blister and peel, forming painful lesions. If left untreated, SJS can lead to life-threatening complications, including infection and organ damage. You might wonder how SJS differs from other skin conditions. SJS is characterized by its sudden onset, typically beginning with flu-like symptoms before the skin reaction occurs. Often-affected sites include the mucous membrane surfaces of the mouth, eyes, and genitals, making it a medical emergency requiring immediate care. Who is Affected by Stevens-Johnson Syndrome? SJS is rare, affecting about 1 to 2 people per million each year. It can occur in individuals of all ages, but some people are at higher risk than others. Certain medications, such as antibiotics, anticonvulsants, and allopurinol are common triggers. People with HIV, a weakened immune system, or a genetic predisposition are also at higher risk. Recognizing the Signs and Symptoms of Stevens-Johnson Syndrome The early signs of SJS can easily be mistaken for common illnesses. Flu-like symptoms such as fever, cough, and sore throat often appear first. However, within days, a painful red or purplish rash develops, spreading across the body. This rash quickly turns into blisters, causing the skin to peel and leave raw areas exposed, which can lead to infection. Other symptoms include: ●            Red, sore eyes that may be sensitive to light ●            Swelling and crusting around the lips or mouth ●            Difficulty swallowing due to sores in the mouth and throat If you or a loved one experiences these symptoms, especially after starting a new medication, seek medical attention immediately. What Causes Stevens-Johnson Syndrome? SJS is often triggered by medications, with antibiotics, anticonvulsants, and pain relievers being the most common culprits. Infections like pneumonia or herpes can also cause SJS in some cases. Although rare, SJS may occur in individuals with genetic markers that make them more susceptible to adverse reactions. The body’s immune system plays a role in SJS by mistakenly attacking healthy skin cells, leading to the characteristic rash and blisters. How is Stevens-Johnson Syndrome Diagnosed? Diagnosing SJS can be challenging because its early symptoms mimic other conditions. A specialist, such as a dermatologist, will examine the skin and mucous membranes and may perform a skin biopsy to confirm the diagnosis. It's crucial to seek care from medical professionals experienced in managing SJS, as it requires urgent treatment. Does Stevens-Johnson Syndrome Mean I’ll Always Have Skin Reactions? Once someone has had SJS, they are at higher risk of developing it again if exposed to the same medication or trigger. For this reason, it's essential to avoid the suspected trigger and wear medical alert bracelets to inform healthcare providers of the condition. Living with SJS can be difficult, but recognizing the condition early and avoiding known triggers are key steps in managing it. Reviewed by: Dr. Bruce Carleton References Schwartz, R. A., & McDonough, P. H. (2013). Stevens-Johnson syndrome: A review of the literature. Journal of the American Academy of Dermatology , 69(1), 32-42. Mockenhaupt, M. (2011). Stevens-Johnson syndrome and toxic epidermal necrolysis: Clinical patterns, diagnostic considerations, etiology, and therapeutic management. Seminars in Cutaneous Medicine and Surgery , 30(4), 255-261. Harr, T., & French, L. E. (2010). Toxic epidermal necrolysis and Stevens-Johnson syndrome. Orphanet Journal of Rare Diseases , 5(1), 39. High, W. A., Roujeau, J. C., & Stern, R. S. (2008). Stevens-Johnson syndrome and toxic epidermal necrolysis: Pathogenesis, clinical manifestations, and management.  Dermatologic Clinics , 26(4), 579-593.

During August, we have some challenges you can join to support us in our fight. Check it out. August 3rd Sunglasses Day Challenge: Support SJS survivors affected by photophobia by wearing dark glasses indoors, outdoors, and at night. Light sensitivity/photophobia is one of the long-term effects of SJS/TEN, as a result some survivors experience severe difficulty dealing with bright light both indoor and outdoor. Some describe this experience as temporary blindness. The next time you see an SJS/TEN survivor wearing dark glasses inside or during the night, think: this is not a fashion statement; it’s a survival statement. August 9th Visual Accessibility Day Challenge: Explore the visual accessibility function on your smartphone and try using these features! Also, be mindful of the e-mails you send today; think about the font size, colours, and spacing. How would these affect individuals with visual impairment? Visual impairment is a decreased ability to see that cannot be fixed with corrective devices such as glasses or contacts. Many SJS/TEN survivors have long-term complications to their eyes even after leaving the hospital. These complications often make it difficult for SJS/TEN survivors to read particular writing or see specific images. Did you know that nearly all smartphones have accessibility features to help overcome sensory impairment? August 17th Virtual Town Hall Challenge: Join us at our Virtual SJS Town Hall Please join us at the SJS Town Hall where we will be sharing updates, connecting with keynote speakers and listening to the harrowing stories of SJS / TEN survivors. ​ This town hall event offers public awareness, education, research updates as well as addressing some common issues and concerns on the subject. SJS/TEN patient representatives lovingly share their stories in an effort to help bring and spread awareness of the illness. August 17th-19th Virtual Move-A-Thon Challenge: Join SJS Canada from ANYWHERE as part of our Virtual “Move-a-Thon.” We are moving our bodies in support of Stevens-Johnson Syndrome Canada (SJSC) from August 17-19. August 18th SJS Awareness Day Challenge: Complete all checks for the day! Don't forget to Social media blast with informational facts about the illness Follow us on social media to hear survivors share their stories with us Encourage others to wear blue, SJS official color Be encouragement to tell someone about SJS/TEN throughout the day Join our virtual/in person SJS/TEN awareness Move-A-Thon Survivors can get together, within a virtual space, with a facilitator and share their experience and support each other. Please feel free to spread the word or distribute SJS awareness materials within the community August 23rd Hat Day Challenge: Support SJS/TEN survivors by wearing a broad rim hat! Check your closet – how many clothes can you identify with UPF? Wear your UPF clothing if you have any! And remember to wear sunscreen of at least SPF 30, reapplying every 80 minutes! Many survivors have to wear broad rim hats and other head covering to protect themselves from the sun as their skin has become very sensitive. Along with the dark glasses, the hat shades the eyes and help allow them to cope with the effect of the sun on their eyes. Some survivors also wear UPF (ultraviolet protection factor) clothing to protect their body from the sun’s UV rays. August 29th Eye Care Day Challenge: Remember to give your eyes a rest during your workday by using the 20-20-20 rule! Every 20 minutes, shift your eyes to look at an objective 20 feet away, for 20 seconds! (Have dry eyes? Use artificial lubricant or try a warm compress! Wet a clean washcloth with warm water and wring it out until somewhat dry. Place the washcloth over your closed eyes for at least 1 minute) The pain of SJS/TEN is so excruciating, sometimes just opening the eyes causes severe pain. As well some survivor’s eyes lids were sealed shut for days because numerous sores covered their eyes. When the eye lids were finally open again, some survivors sustain severe vision loss, and for some their eyelids never opens resulting in blindness. We kindly ask you to post your photo or video as you engage in these activities with #sjscantstopme