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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.

Programs and Services Survivor's Stories Here you'll find amazing stories from people. Read More Support Group We are here to help you. Send us a message. Read More Educational Want to learn more about SJS/TEN disease? Read More Volunteer Your help is greatly appreciated. Be part of our group. Read More How Can We Help We Care We care for supporters and SJS/TEN survivors on the recovery journey. Stay together The group is developed to join together those of us who are dealing with similar challenging circumstances – the long-term effects of SJS/TEN. Support Groups Through the sharing of our experiences, we’re able to offer support, encouragement, comfort to each other, and receive the same in return. Shared Experiences The SJS/TEN recovery journey can be very challenging, therefore one of the best medicines can often be the voice of people who have walked in your shoes. Medical Specialists Our monthly meetings provide the opportunity to have personal conversations with expert medical specialists in the SJS/TEN field. Together we can do better We are Stronger Together in the fight against SJS/TEN. #SJSCANTSTOPME SJS Awareness Month Read more... SJS Information Poster Download Poster Find a Doctor Read more... SJS Facts Sheet Download Sheet

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, Apr 16 Virtual Zoom online Conference More info Save spot Annual General Meeting (AGM) 2025 Mon, May 05 Zoom Meeting 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

SJS Educational Do you know what's SJS? SJS and TEN represent different degrees of severe, acute, life-threatening mucocutaneous reactions. It causes the skin to become red and purple, tender, and peel away from the body. Know more SJS Awareness Month Read more... SJS Information Poster Download Poster Sunnybrook Magazine Sonia’s Story Read story Survivor's Stories Find a Doctor Read more... SJS Facts Sheet Download Sheet A case of TEN (with Dr. Neil Shear- Sunnybrook hospital): Read story Supportive Story Sharing: Understand the Effect of SJS/TEN on Cognition, Emotion, and Behavior: What We Have Learned from Qualitative Interviews. Great Debates in Medical Dermatology. SJS/TEN: Acute reaction, or chronic disease? Concerts: 2020 2022 2024 Town Hall Meetings Skin of Colour Eye & Skin: How SJS/TEN Affects the Eyes & Skin of Color On February 29, 2024, a virtual town hall titled "Eye & Skin: How SJS/TEN Affects the Eyes & Skin of Color" raised awareness about Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN). Moderated by Coleen Lambert, it featured opening remarks from Sonia Whyte-Croasdaile, a moment of silence for victims, and insights from speakers like Francene Francis and patient representatives Karen Worthey and Jeremy Falk. Experts Dr. Rannakoe Lehloenya, Dr. Martin Huer, and Dr. Gloria B. Chiu discussed skin and ocular issues related to SJS/TEN, concluding with a Q&A session and closing remarks from Vincent Cornish on the importance of community support. Eye of the Storm Head to Toe On August 29, 2024, the virtual town hall "SJS/TEN Head to Toe" was co-moderated by Coleen Lambert and Sabrina Hundal. It opened with a welcome message, land acknowledgment, and remarks from Sonia Whyte-Croasdaile. Attendees observed a moment of silence for those affected by Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) and learned about the SJSC Move-A-Thon Fundraiser. Patient representatives Katie Farah and Kamna Narin shared personal stories, while experts Dr. Michelle Ramien, Dr. Esther Fuchs, Dr. Darren G. Gregory, and Dr. Elizabeth J. Phillips offered insights on SJS/TEN. The event concluded with a roundtable discussion, a prize draw by Frank Linhart, and closing remarks thanking participants for their contributions to awareness efforts. SJS/TEN & DRESS An in-depth webinar on Stevens-Johnson Syndrome (SJS), Toxic Epidermal Necrolysis (TEN), and Drug Reaction with Eosinophilia and Systemic Symptoms (DRESS). This session brings together medical experts and patient representatives and advocates to explore the clinical presentation, diagnosis, treatment, and long-term impacts of these rare but serious adverse drug reactions. SJS/TEN Research Study