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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

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 Elpizo Counseling Tue, Nov 25 Zoom Meeting More info Save spot December Benefits Concert Sun, Dec 07 Virtual Zoom Event More info Save spot Save the Date Christmas Concert Sun, Dec 07 Zoom More info Details Multiple Dates SJSC Support Group Wed, Dec 17 Virtual Zoom online Conference 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

What's SJS? What is Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) SJS is a rare, severe skin condition brought on by an adverse reaction to a medication. Countless drugs can precipitate SJS, but the most common medications include non-steroidal anti-inflammatory drugs (e.g. ibuprofen), antibiotics (e.g. penicillins), anticonvulsants (e.g. phenytoin), and allopurinol. SJS can affect anyone taking medications but typically targets those under the age of 30. SJS starts with flu-like symptoms and is followed by a painful rash that spreads over the body, blisters, and peels. SJS and TEN are differentiated by the proportion affecting the entire body. When less than 10% of the entire body is involved, it is recognized as SJS; over 30% is called TEN. Without an early diagnosis, SJS/TEN can lead to systemic bacterial infections, pneumonia, multiple system organ failure and death. The risk of death for SJS is approximately 1-5%, and for TEN 25%-35%. However, survivors of SJS/TEN have life-long complications affecting their eyes, hair, genitourinary tract, and more. While there are no definitive documented statistics on the effects of SJS/TEN within the Canadian population, there are over 50 known cases nationwide, including children, teens, adults and elders. The cases include both males and females of a variety of races. Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) are severe skin reactions often triggered by medications or infections. They involve widespread skin detachment and mucous membrane involvement, leading to significant morbidity and mortality. SJS and TEN represent different degrees of severe, acute, life-threatening mucocutaneous reactions mainly resulting from drugs. SJS/TEN causes the skin to become red and purple, tender, and peel away from the body. These diseases affect not only the skin on the external surface of the body but also the moist lining of the mouth, nose, eyes, genitals, and other body parts. Both conditions are considered a medical emergency that requires hospitalization and patient management is usually provided in intensive care units or burn centers. Recovery can take weeks to months, and there are numerous long-term sequelae. Medications are the major precipitating cause and some drugs have a greater genetic risk factor. Newer treatments include safe anti-inflammatory biological injections like Etanercept. WOMEN are nearly 1.5x more likely to experience SJS/TEN than men. SJS/TEN AFFECTS 1-7 cases per million patients. Additional Information about SJS / TEN: Definition of syndrome A life threatening disease with blistering of the skin and eroding of mucous membranes (eyes, mouth, genitals). Cause 80% are caused by an identifiable drug, 20% are unknown. Drugs are varied but anti-seizure medications, sulfonamides and allopurinol are top of the list. Qualifiers of the syndrome The severity of SJS to TEN depends on the amount of skin involved (can be 100%) and all patients with SJS/TEN will need to be treated in an Intensive Care. The term SJS is used when the blistering of the skin involves less than 10% of the total body surface area. The term TEN is used when the blistering involves more than 30% of the body surface area. The term SJS/TEN overlap is used when there is blistering that covers between 10 to 30% of the body surface area. Impact on patients' quality of life Depending on the stage many patients will die. For the 80% who survive there are life-long medical, physical, and psychological traumas that persist. Treatment Early treatment is life-saving. Different stages might need different treatments. Intensive Care Burn Centers are optimal. Therapies include immune modulators like corticosteroids, anti-TNF (e.g., Etanercept) biologicals, and amnion for eye involvement. Prevalence rates in Canada Perhaps 1 to 2 per million Canadians will be afflicted per year. Some Facts The condition is rare so it might be missed. Delay is a risk for a poor outcome. There are genetic tests for some patients that might help reduce the risk. Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis are two rare, acute, but life-threatening skin conditions. Both conditions are usually allergic reactions to medication, however; in some cases, the causes remain unknown. Approximately 1-7 people per million are affected globally each year Here is a summary of their long-term effects: 1. Skin and Mucous Membranes: Scarring: Severe scarring and pigmentation changes can occur, especially in areas where the skin has detached. Dryness and Sensitivity: Chronic dryness and sensitivity of the skin can persist, requiring ongoing dermatological care. Nail Abnormalities: Permanent nail loss or deformities may occur due to damage to the nail beds. 2. Ocular Complications: Chronic Dry Eye: Damage to the tear ducts can lead to persistent dry eye syndrome. Vision Impairment: Scarring of the cornea, conjunctiva, or eyelids can result in vision loss or blindness. Photophobia: Sensitivity to light may persist due to ocular surface damage. 3. Respiratory System: Chronic Respiratory Issues: Damage to the respiratory mucosa can lead to chronic cough, bronchitis, or even pulmonary fibrosis. Airway Obstruction: Severe cases may lead to long-term airway obstruction requiring medical intervention. 4. Gastrointestinal Tract: Esophageal Strictures: Scarring in the esophagus can lead to strictures, causing swallowing difficulties. Malabsorption: Damage to the gastrointestinal lining may result in long-term absorption issues. 5. Genital and Urinary Tract: Strictures and Scarring: Scarring can cause strictures in the urinary tract and genital area, leading to difficulties in urination and sexual dysfunction. 6. Psychological Impact: Post-Traumatic Stress Disorder (PTSD): The traumatic experience and prolonged recovery can lead to PTSD, depression, and anxiety. Body Image Issues: Visible scarring and disfigurement can cause significant distress and impact self-esteem. 7. Neurological Complications: Peripheral Neuropathy: Some patients may experience nerve damage leading to chronic pain or sensory issues. 8. Immune System: Long-term Immunological Changes: SJS/TEN can lead to changes in immune system function, potentially increasing susceptibility to infections or autoimmune disorders. These long-term effects necessitate a multidisciplinary approach to care, involving dermatologists, ophthalmologists, pulmonologists, gastroenterologists, urologists, psychologists, and other specialists to manage the diverse and complex sequelae of these conditions. Regular follow-up and comprehensive care plans are essential for improving the quality of life for affected individuals.