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Stevens–Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) are rare, life-threatening reactions, most often triggered by medications. Despite their severity, early SJS/TEN is frequently misdiagnosed, delaying withdrawal of the offending drug and appropriate care. For a condition where hours and days matter, misrecognition can significantly worsen outcomes. As we recognize Rare Disease Month, it is important to examine why SJS/TEN is so often missed, what it is commonly mistaken for, and how diagnostic challenges may intersect with broader health inequities.   Why SJS/TEN Is Commonly Misdiagnosed SJS/TEN is rare, and many clinicians will encounter few cases during their careers. As a result, early presentations are often interpreted as more common and less severe conditions. A major review on severe cutaneous drug reactions notes that approximately one-third of patients referred to specialist centers with suspected SJS/TEN ultimately receive a different diagnosis, highlighting the diagnostic uncertainty surrounding this disease¹. This uncertainty is partly driven by the nonspecific nature of early symptoms, which often include fever, malaise, sore throat, and eye discomfort. At this stage, SJS/TEN may resemble viral illness, allergic drug eruptions, or other more common rashes.   Common Conditions Mistaken for SJS/TEN The differential diagnosis of SJS/TEN is broad. According to Bachot and Roujeau, the most frequent misdiagnoses include erythema multiforme major, acute generalized exanthematous pustulosis, staphylococcal scalded skin syndrome, autoimmune blistering diseases, and exfoliative dermatitis¹. This diagnostic overlap is clinically important. Prompt recognition and immediate discontinuation of the causative medication remains the most critical intervention in reducing morbidity and mortality. Delays caused by misdiagnosis allow disease progression and increase the risk of complications.   When SJS Presents Before Skin Detachment Misdiagnosis is especially likely when SJS/TEN presents before classic skin findings appear. A published case report describes a young woman who initially presented with fever, conjunctivitis, and superficial keratitis, and was treated for presumed infectious eye disease before developing mucosal erosions and skin involvement consistent with SJS². In this case, ocular symptoms preceded cutaneous findings, delaying diagnosis. This example illustrates an important point: SJS/TEN may begin with ocular or mucosal symptoms alone, and clinicians outside of dermatology may be the first to encounter the disease.   Rare Disease Status and System-Level Misclassification Misdiagnosis is not limited to bedside evaluation. Large electronic health record studies demonstrate that accurately identifying true SJS/TEN cases within health systems is challenging. An analysis of electronic health records covering nearly 60 million individuals found that only a small proportion of cases initially coded as SJS/TEN were confirmed after detailed chart review by dermatologists³. This finding reflects ongoing difficulties in distinguishing SJS/TEN from other severe skin reactions, even at the population level. For patients, misclassification can lead to delayed referrals, inconsistent documentation, and barriers to long-term follow-up care.   Racial Disparities and Risk Considerations While SJS/TEN affects individuals of all backgrounds, risk is not evenly distributed across populations. A large U.S. hospitalization study examining drug-associated SJS/TEN found that Asian and Black patients were disproportionately represented among hospitalized cases, compared with White patients⁴. These disparities were strongly associated with known genetic risk factors, including HLA variants linked to severe drug reactions. Although this study focuses on incidence rather than misdiagnosis, it raises an important concern: communities at higher risk for SJS/TEN may also be vulnerable to delayed recognition, particularly when combined with underrepresentation in medical education and structural barriers to specialist care.   Why Early Recognition Matters SJS/TEN carries a substantial risk of mortality, particularly in TEN, and survivors often experience long-term complications affecting the skin, eyes, and mucous membranes. Across studies, early diagnosis and rapid withdrawal of the offending drug remain the most important factors influencing outcomes¹. Even short delays can allow limited disease to progress to extensive epidermal necrolysis.   The Takeaway SJS/TEN is rare, but misdiagnosis is common. Early symptoms may resemble benign illnesses, and delayed recognition can have devastating consequences. As we reflect during Rare Disease Month, improving awareness, diagnostic accuracy, and equity in recognition is essential to improving outcomes for all individuals affected by SJS/TEN.   References Bachot N, Roujeau JC. Differential diagnosis of severe cutaneous drug eruptions. American Journal of Clinical Dermatology . 2003;4(8):561–572. Chan F, Benson MD, Plemel DJA, Mahmood MN, Chan SM. A diagnosis of Stevens–Johnson syndrome in a patient presenting with superficial keratitis. American Journal of Ophthalmology Case Reports . 2018;11:167–169. Davis RL, Gallagher MA, Asgari MM, et al. Identification of Stevens–Johnson syndrome and toxic epidermal necrolysis in electronic health record databases. Pharmacoepidemiology and Drug Safety . 2015;24(7):684–692. Lu N, Rai SK, Terkeltaub R, et al. Racial disparities in the risk of Stevens–Johnson syndrome and toxic epidermal necrolysis as urate-lowering drug adverse events in the United States. Seminars in Arthritis and Rheumatism . 2016;46(2):253–258.

Recovery from Stevens–Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) does not end when the skin stops blistering. For many survivors, the weeks and months after hospitalization are defined by rebuilding strength, healing wounds, and restoring physical function. Two pillars of this recovery, nutrition and physical rehabilitation, are often under-discussed, yet they are central to healing.   This post explores what research and clinical guidance tell us about how food, nutrients, and movement support recovery after SJS/TEN, and why these elements matter just as much as medications and wound care.   Why Nutrition Matters So Much After SJS/TEN SJS and TEN cause extensive skin and mucosal loss, triggering a hypermetabolic, catabolic state  similar to severe burns. The body rapidly loses protein, fluids, and electrolytes while simultaneously needing large amounts of energy and nutrients to rebuild damaged tissue. A multicenter review by Graves et al. (2016) emphasized that patients with TEN often experience: ·       Profound protein losses through open skin and wounds ·       Increased energy expenditure ·       High risk of malnutrition without early and aggressive nutrition support Inadequate nutrition during the acute and recovery phases has been associated with delayed wound healing, increased infection risk, and prolonged hospital stays.   Calories and Protein: The Foundation of Healing Multiple studies highlight high-calorie, high-protein intake  as essential in SJS/TEN recovery. ·       Coss-Bu et al. (1997)  demonstrated that patients with TEN have significantly elevated energy and nitrogen requirements, similar to patients with large-area burns. Without sufficient calories and protein, patients enter negative nitrogen balance, impairing skin regeneration and immune function. ·       Gingeri et al. (2019)  reinforced that early nutritional intervention, preferably enteral feeding when oral intake is limited, supports faster epithelialization and overall recovery. Protein is particularly critical. It supports: ·       New skin formation ·       Immune defense ·       Muscle mass preservation In practical terms, many patients require protein intake well above typical daily recommendations , often guided by a registered dietitian.   Micronutrients and Wound Healing Beyond calories and protein, specific vitamins and minerals play key roles in recovery. According to Eating Well for Wound Healing  from Alberta Health Services: ·       Vitamin C  supports collagen formation and immune function ·       Vitamin A  assists with skin repair and epithelialization ·       Zinc  is essential for cell growth and wound closure ·       Iron  supports oxygen delivery to healing tissues   Deficiencies in these nutrients can slow healing and worsen fatigue, which are both common challenges for SJS/TEN survivors. While supplementation may be helpful in some cases, guidance from a healthcare professional is important to avoid excess intake or interactions.   When Eating Is Hard Many people recovering from SJS/TEN struggle with: ·       Painful oral or esophageal involvement ·       Altered taste ·       Dry mouth ·       Gastrointestinal symptoms The multicenter review by Graves et al. (2016) notes that enteral nutrition (tube feeding)  should be initiated early when oral intake is insufficient. Even during later recovery, strategies such as: ·       Soft or blended foods ·       Small, frequent meals ·       High-calorie oral nutrition supplements can help meet nutritional needs without overwhelming the patient.   Physical Recovery: More Than Just Rest Prolonged hospitalization, bed rest, and systemic inflammation often lead to muscle wasting, joint stiffness, and functional decline  after SJS/TEN. A 2024 case report by Kumar highlighted the benefits of early mobilization and functional training  in a patient recovering from SJS. The report demonstrated that: ·       Gradual, supervised movement improved strength and endurance ·       Early physiotherapy reduced long-term disability ·       Functional training supported faster reintegration into daily activities Importantly, rehabilitation was tailored to the patient’s pain levels and skin healing status, emphasizing safety and pacing.   The Role of Physiotherapy and Gentle Movement Physical rehabilitation after SJS/TEN may include: ·       Range-of-motion exercises to prevent contractures ·       Progressive strengthening to rebuild muscle ·       Balance and endurance training ·       Functional tasks such as walking, stair climbing, and self-care activities Even short periods of movement, when medically safe, can help counteract deconditioning. For many survivors, working with a physiotherapist familiar with burn or dermatologic injury recovery can be transformative.   Recovery Is Not One-Size-Fits-All The nutritional and physical needs of someone recovering from SJS differ widely depending on: ·       Extent of skin involvement ·       Presence of mucosal or gastrointestinal injury ·       Age and pre-illness health ·       Ongoing complications or chronic sequelae What the literature consistently emphasizes is the importance of multidisciplinary care  that involves dietitians, physiotherapists, physicians, and nurses to support holistic recovery.   The Takeaway Healing after SJS/TEN requires far more than time. Adequate nutrition fuels skin repair, immune recovery, and strength. Thoughtful physical rehabilitation restores function, independence, and confidence. For survivors, caregivers, and clinicians alike, recognizing nutrition and movement as core components of recovery can make a meaningful difference in long-term outcomes. The fight doesn’t end when the rash fades. Recovery is an active process, and the body needs fuel and movement to truly heal.   References 1.       Graves C, Faraklas I, Maniatis K, Panter E, La Force J, Aleem R, Zavala S, Albrecht M, Edwards P, Cochran A. Nutrition in toxic epidermal necrolysis: a multicenter review. Nutrition in Clinical Practice. 2016 Dec;31(6):836-40. 2.       Alberta Health Services. Eating Well for Wound Healing [Internet]. Alberta Health Services; 2017. Available from: https://www.albertahealthservices.ca/assets/info/nutrition/if-nfs-eating-well-for-wound-healing.pdf 3.       Kumar N. Early mobilization and functional training for early recovery after Stevens–Johnson syndrome: a case report. J Res Sports Rehabil. 2025 Dec;12(4): 143-147. doi:10.30476/jrsr.2024.98221.1353 4.       Coss‐Bu JA, Jefferson LS, Levy ML, Walding D, David Y, Klish WJ. Nutrition requirements in patients with toxic epidermal necrolysis. Nutrition in clinical practice. 1997 Apr;12(2):81-4. 5.       Gingeri C, Devi A, Qurathulain, Raj E. Nutritional management in Stevens–Johnson syndrome. IP J Nutr Metab Health Sci. 2019;2(1):20–22. doi:10.18231/j.ijnmhs.2019.005

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

Meet The Team Founder/President Founder & President Sonia Whyte-Croasdaile Sonia Whyte-Croasdaile RPN, RSW is a wife, mother, nurse, Registered Social Worker, a trained Relaxation/Life Coach, and the Founder and President of Stevens-Johnson Syndrome Canada. She is experienced in ... Read More Board of Directors Co-Chair Strategic & External Lead Sanjay Kumar Sanjay Kumar is a Sariel Entpreneure. His expertise includes Digital Marketing, IT Consulting Services, and Managing cross-functional teams. Sanjay helps enterprises ... Read More Board Member | Medical Advisor Dr. Bruce Carleton Dr. Bruce Carleton has over 30 years of experience in clinical pharmacology and investigating the safety and effectiveness of drugs used in both children and adults. He is the founder and CEO... Read More Board Member Sonia Bromfield-Cornish Sonia Bromfield-Cornish has been a practicing pharmacist for over 25 years, working across various sectors of the industry, including Community Pharmacy, Hospital Pharmacy, Compounding ... Read More Member at Large/Secretary Coleen Lambert Coleen Lambert is a licenced Financial Broker and Coach. Prior to building her own Financial Services and Financial Coaching company in 2020, Coleen worked as a Legal Professional for more than 16 years in various areas... Read More Board Member Phatay Waraich Phatay is a Vendor Manager with TD Bank within the technology team. He has had various roles within the financial industry from procurement and third party risk management to... Read More Co-Chair – Governance & Operations Lead Dr. Karen Worthy Dr. Karen Worthy is a Professor at the University of South Carolina College of Nursing. Dr. Worthy has a 28-year history in professional nursing and has been a nurse educator for 19 years. She received an ADN, BSN, MSN, MPH, a Graduate Certificate in Leadership Studies,... Read More Patient Representative Jeremy Falk My name is Jeremy Falk and I live in Los Angeles. In 2005 I had a bacteria staph infection. After taking two weeks of a 21-day supply of Bactrim (a Sulfa-based antibiotic), my eyes and throat started to feel inflamed and irritated. I went to ... Read More Board Member Dr. Michele Ramien Dr. Ramien is a hospital-based academic dermatologist at the Alberta Children’s Hospital who is board-certified in both Canada and the United States. A first-generation... Read More Medical Advisors Dr. Bruce Carleton PharmD, FCP, FISPE Dr. Bruce Carleton has over 30 years of experience in clinical pharmacology and investigating the safety and effectiveness of drugs used in both children and adults. He is the founder and CEO... Professor and Chair Division of Translational Therapeutics, Department of Pediatrics Faculty of Medicine University of British Columbia Director Pharmaceutical Outcomes Programme BC Children’s Hospital Senior Clinician Scientist BC Children’s Hospital Research Institute Vancouver Dr. Elizabeth J. Phillips MD, FRCPC, FRACP, FIDSA, FAAAAI Dr. Elizabeth Phillips is a physician-scientist clinically trained in infectious diseases, immunology, and clinical pharmacology who has established new clinical and research programs in drug hypersensitivity... Professor of Medicine, Dermatology, Pathology, Microbiology, and Immunology John A. Oates Chair in Clinical Research Director, Center for Drug Safety and Immunology Director, Personalized Immunology, John A. Oates Institute for Experimental Therapeutics Vanderbilt University Medical Center Professor of Pharmacology Vanderbilt University School of Medicine Coordinators Francene Francis Administrative Assistant to the President Francene has served in this capacity since 2022. She has a personal stake in the organization as a close family member has persevered and survived the onslaught of the illnesses and still continues to live with the aftereffects. Alongside the President, Francene is responsible for overseeing the daily operations of the organization and ensuring that the President's visions for SJS Canada are carried out to the best of our volunteer capacity. Larba Ouedraogo Web Developer and Team Coordinator I worked as a Senior Audiovisual Technician before moving to the USA, where I completed a Master's degree in Mass Media and Strategic Communications. I volunteered with different organisations, such as Education Without Borders (EwB). At SJSC Canada, I manage the website development, lead the website team, ensure compliance, and improve user experience. I am using technology for better health outcomes. Jessica Chan Bookkeeper Coordinator Jessica joined SJS Canada as a bookkeeping coordinator back in October 2025. Her role with SJS Canada involves managing bookkeeping functions and preparing financial reports for the board in a timely manner. Jessica is a Chartered Professional Accountant and has 3+ years’ experience in public practice specializing in US tax and Canadian tax. She made the switch and went into industry a couple of years ago and is now working as Manager of Financial Reporting for the health authority on Vancouver Island. Jessica was born and raised in Toronto, but she met her husband and moved to the west coast to start a family and a new career. In her spare time, she loves practicing yoga and going for hikes with her family. Jenna Mistry Patient Support Coordinator TBA Mawish Masud Volunteer Coordinator I serve as a Volunteer Coordinator with SJS Canada, where I recruit, onboard, and support volunteers to ensure meaningful and positive engagement. I maintain structured systems to track volunteer roles and hours, collaborate with program leads to align volunteer resources with organizational needs, and help organize appreciation initiatives that strengthen retention and morale.With over six years of experience in operations and quality within automotive and service environments, I bring expertise in ISO 9001 compliance, internal audits, vendor development, and process improvement. My background in documentation management and cross-functional coordination allows me to build efficient, well-organized systems that support both people and programs. I am committed to fostering strong community relationships while delivering structured and results-driven support. DanaHufe Marketing and Communications Coordinator Dana is a passionate writer and dedicated teacher who has spent significant time living and working in Europe before making Toronto her home. She has extensive global experience in communications within the Rare Disease space, and has previously worked in content writing and design across nonprofit, education, and corporate spaces. Dana strongly believes in the power of communication in inciting change and raising awareness about critical healthcare issues. She is excited to use her skills to contribute to the SJS Canada team, and strives to improve her understanding of the challenges faced by those living with SJS/TEN. In her current role, Dana is responsible for the social media presence, email communication, and outreach for the organization. Dana hopes to connect patients, families, and healthcare professionals, fostering a supportive network that facilitates education and advocacy. Sarah Ahmed Community Outreach Coordinator TBA Advisory Committee Karen Worthy PhD, MPH, RN, CNE, CNEcl Dr. Karen Worthy is a Professor at the University of South Carolina College of Nursing. Dr. Worthy has a 28-year history in professional nursing and has been a nurse educator for 19 years. She received... Read More Vincent Cornish Vincent Cornish, FICB. Vincent is a “Fellow of the Institute of Canadian Bankers”. He obtained his FICB designation through extensive studies at: York University, TMU (Toronto Metropolitan University – formally Ryerson University)... Read More Lorna Baker Lorna has been a Registered Nurse since 1996 and served as a Community Health Nurse from 1997 to 2010. Following this, she held the position of Certified Diabetes Educator at Unison Health and Community Services from... Read More

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, Mar 18 https://us02web.zoom.us/j/82137370516?pwd=W More info Save spot Join the Circle of Hope Give Monthly. Create Lasting Impact. Every month, your generosity helps SJS Canada support survivors of Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) through advocacy, awareness, and education. By joining the Circle of Hope, you become part of a compassionate community that ensures no survivor faces their journey alone. Whether you give $5, $10, $20, or more, your steady support provides strength, stability, and hope all year long. Join today and make your impact last. Become a Monthly Donor Read More Donate Monthly 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

Volunteer CONSIDER BECOMING A PART OF OUR VOLUNTEER TEAM TODAY. Our volunteers are exceptional. SJS Canada is very thankful for the great work that our volunteers do. Without volunteers, we could not exist. We always seek volunteers to join our team and help us bring awareness to this deadly disease. Volunteer Application Showing Appreciation to Our Volunteers MAY 2019 Showing Appreciation to Our Volunteers MAY 2018