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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.

Survivor's Stories We would be honoured to share your experience as a beacon of support and unity. Sonia's City TV Interview Julie’s story Meet Julie who miraculously survived SJS/TEN. YC’s story I was a completely healthy individual until I got the flu vaccine... Jeremy’s story I had a bacterial infection in 2005. After 13 days of taking antibiotics, I developed... Kathleen’s story My name is Kathleen, and I am from Washington, USA, just north of... Anastasia’s Story I was diagnosed with TEN in early 2016 when I was 28 years old. I was 5th grade... Jane’s story My name is Jane Grady and I’m an SJS/TEN survivor. I was prescribed a medication ... Jennifer’s Story My name is Jennifer Lane. I have just turned 48, and this is my SJS/Ten story. It all... Bruce’s Story Late February 2005, I developed symptoms of fever, headache, and... Kim’s Story The impact of Stevens Johnson Syndrome affects each victim differently depending on...

Stevens -Johnson Syndrome Canada. SJS Support group. Learn about the disease that burns the body from the inside out. Promoting health by providing people suffering from SJS/TEN as well as their families and care givers with access to related counselling, support groups and information programs. Welcome to Stevens-Johnson Syndrome Canada Providing support for survivors, family, friends, and caregivers in the SJS/TEN community Our Mission Our Goal, Vision & Commitment Our Events Register & Help Make Change Get Involved Volunteer, Participate, or Donate Upcoming Events Multiple Dates SJSC Support Group Wed, Jul 16 Virtual Zoom online Conference More info Save spot Subscribe to Our Newsletter First Name Last name Email Sign Up At SJS Canada, we are committed to promoting health by providing those affected by SJS/TEN, as well as their families and caregivers, with access to counseling, support groups, and information programs. Read About the Center Jane G. I am now a part of a group of survivors from many places who zoom and talk, email, and encourage and support each other on a regular basis. It is a valuable asset in my post SJS overlapping TEN day to day feel good moments, a place to gather knowledge, ask questions and listen to others. Peace and love. ✌️🌸 Testimonials See all Donate Today Donate to Make a Difference. Your donation is crucial to our mission of supporting patients and their fa milies who are affected by SJS/TEN. Donate Now

Support Group Most often when an individual is trying to cope through challenging times, family members and friends may sympathize, but they don’t always know what to say or the best ways to help. Reasons to join our SJS/TEN Support Group: We care for supporters and SJS/TEN survivors on the recovery journey. The group was developed to connect those of us who are dealing with similar challenging circumstances—the long-term effects of SJS/TEN. Through sharing our experiences, we can offer support, encouragement, and comfort to each other and receive the same in return. The SJS/TEN recovery journey can be very challenging. Therefore, one of the best medicines is often the voice of people who have been in your shoes. Our monthly meetings allow personal conversations with expert medical specialists in the SJS/TEN field. Our Support Group is a safe and nurturing space where individuals come together to share experiences, encouragement, and foster personal growth. Our mission is to empower each member their journey to better health through connection, understanding, and shared resources. Join us as we support one another in achieving our wellness goals and building a healthier future together. Read more about SJS treatment info@sjscanada.org Name Email Subject Your message Send Thanks for submitting! Regional Support What is the study about? Survivors of Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) face numerous psychological and physiological challenges that significantly affect their quality of life. Many experience difficulties in returning to work and maintaining relationships. A substantial number, approximately 50%, remain hesitant to take medications even five years after their discharge. Feedback from patients, family caregivers, and clinicians indicates that current general quality of life (QoL) measures do not adequately reflect the unique experiences of SJS/TEN survivors. To address this gap, our project aims to develop and test a specific QoL outcome measure tailored for individuals affected by SJS/TEN, which we have named QoLTEN. We have created a draft version of this measure and would like to invite you to participate in a two-round survey designed to evaluate how effectively QoLTEN captures your quality-of-life experiences. Your input will be invaluable in refining this tool to better serve the needs of SJS/TEN survivors. Who is on the research team? This study is led by Professor Pauline O’Reilly from the Department of Nursing & Midwifery at the University of Limerick. The research team also includes Professors Sarah Walsh, Saskia Ingen Housz-Oro, Chris Bunker, Roni Dodiuk-Gad, Donal Fortune, Ailish Hannigan, and Ms. Sheila Ryan. Together, they are dedicated to advancing our understanding of quality of life for survivors of SJS/TEN. Who can participate? We are inviting adults who had SJS/TEN to take part in the two round online survey. What does it involve? Participants will be invited to take part in a two-round survey, with each round taking approximately 20 minutes to complete. The survey will be conducted online using GDPR-compliant software (Qualtrics). If you consent to participate, you will receive a link to the first survey, which will include the QoLTEN measure along with some additional questionnaires, including a brief demographic survey and two other quality of life assessments. Two weeks later, you will receive another link to repeat the process, allowing us to incorporate any feedback you provided into QoLTEN. The insights gathered from this study will be instrumental in finalizing the development of the QoLTEN measure. If you choose to participate, your name will be entered into a draw for a voucher or gift as a token of appreciation. What are the benefits? We hope that QoLTEN will provide significant benefits to patients diagnosed with SJS or TEN in the future. This initiative represents a practical step towards addressing the unique needs of SJS/TEN patients and has the potential to enhance care by aiding clinicians in assessing their condition and developing appropriate treatment plans. Furthermore, QoLTEN aims to facilitate communication between clinicians and patients, enabling more meaningful discussions about how the condition impacts their lives. What are the risks? There are no known risks associated with this research project. Participation in this study is entirely voluntary. If at any point you decide that you no longer wish to participate, you are free to withdraw without any consequences. Your decision to stop participating will be respected, and there will be no negative repercussions for changing your mind. How will data be protected? The Data Controllers for this study are the University of Limerick, Plassey, Limerick. All information collected from the survey will be kept confidential, with password protection applied to each file on the university’s computer systems. The Principal Investigator will securely store all data, including consent forms. Participants will not have their names attached to any published information; instead, they will be assigned a study ID code. Once the study is completed, all data will be retained for seven years in accordance with the Data Protection Act (2018) and will then be securely erased from electronic sources, including audio files, with any hard copies being shredded. The University of Limerick will not disclose your personal data to any third parties. For more information on Data Protection at the University, please visit www.ul.ie/dataprotection. You can also reach out to the Data Protection Officer at dataprotection@ul.ie or by writing to the Data Protection Officer, Room A1-073, University of Limerick, Limerick. How are the results shared? The data collected from the surveys will be analyzed and compiled by Professor Pauline O’Reilly and the research team. The primary aim of the surveys is to assess how effectively QoLTEN measures your quality-of-life experiences. The findings from this research will be submitted for publication in a peer-reviewed journal. Rest assured, the names of research participants and any identifying details will not be included in any publications.