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 Dr. 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 Read More 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 Read More 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. Fey Chukwuelue Patient Support Coordinator Fey Chukwuelue serves as the Patient Support Coordinator at Stevens-Johnson Syndrome Canada. With an educational background in Nursing and Public Health, Fey is dedicated to connecting with survivors, providing compassionate guidance, and helping navigate health resources for patients and families affected by SJS/TEN. Fey is passionate about advancing patient advocacy, health education, and building a supportive community across Canada. 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. Khushi Sharma Fundraising Coordinator Khushi is currently an Honours Biology student at York University with a strong interest in healthcare, community service, and nonprofit initiatives. She is passionate about community service/advocacy, and has experience supporting nonprofit organizations through education, and meaningful community engagement. She is proud to help advance SJS Canada's mission of supporting patients, and increasing awareness of SJS and TEN. As a Fundraising Coordinator at SJS Canada, Khushi supports the planning and coordination of fundraising initiatives, assists with donor outreach and event logistics, and helps develop resources that strengthen the organization's fundraising efforts. In her free time, Khushi enjoys spending time with her family and friends, and going on walks with her dog! 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. 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, Oct 21 Zoom 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

SJS Canada: Circle of Hope Join Our Community of Compassionate Monthly Donors Every day, survivors of Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) face unimaginable challenges, from the physical scars to the emotional toll of recovery. At SJS Canada, we walk alongside survivors and their families, offering advocacy, awareness, and support when it’s needed most. The Circle of Hope brings together caring individuals like you, people who believe no survivor should face this journey alone. Join The Circle of Hope Today Purpose & Vision The Circle of Hope is SJS Canada’s monthly donor initiative, created to build a strong, compassionate community of supporters who make ongoing impact possible. Your monthly gift helps us: Sustain vital survivor support programs: ensuring individuals and families have a lifeline through their recovery. Advance awareness and advocacy efforts: helping to prevent misdiagnosis and improve patient care. Support education and research: promoting better understanding and early recognition of SJS/TEN. Maintain organizational stability: allowing us to respond quickly when families reach out for help Why Give Monthly? When you give monthly, you’re not just making a donation, you’re joining a movement of hope, healing, and change. Consistency matters: Your steady support means we can serve survivors every month, not just when one-time donations come in. Impact grows: Even small gifts — $5, $10, $20, or more add up to life-changing support throughout the year. You belong: As part of our Circle of Hope, you’ll receive updates and stories showing how your generosity makes a real difference. Together, we can create a future where every SJS/TEN survivor feels seen, supported, and empowered. Join The Circle of Hope Today What Your Monthly Gift Can Do Your monthly contribution, no matter the size, directly fuels SJS Canada’s programs and outreach: 💜 $5/month – Helps provide printed resources and survivor guides to newly diagnosed individuals and their families. 💜 $10/month – Supports outreach and education initiatives to raise awareness among healthcare professionals and the public. 💜 $20/month – Contributes to survivor peer support programs, ensuring no one faces recovery alone. 💜 $50/month – Helps fund advocacy and policy efforts to improve patient care and systemic awareness of SJS/TEN. 💜 $100/month and above – Strengthens the long-term sustainability of SJS Canada’s national programs and emergency response initiatives. Every contribution builds a stronger, more compassionate network of care and awareness across Canada. Voices of Hope “SJS Canada was there when I didn’t know where to turn. The support, understanding, and information they gave me helped me rebuild my life. Knowing there are people out there who care gives me strength.” — SJS Survivor, Ontario “Becoming a monthly donor is my way of giving back and helping others get the same support I once received. It’s a small act that creates lasting hope.” — Circle of Hope Member Join the Circle of Hope Today Your commitment gives hope that lasts all year long. Click below to become a Monthly Donor and make your impact today. Join the Circle of Hope – Donate Monthly Join The Circle of Hope Today

In Memoriam

Affiliates Our partnerships as affiliates with the Canadian Skin Patient Alliance (CSPA) and the International Alliance of Dermatology Patient Organizations (IADPO—also known as GlobalSkin) have afforded us the opportunity to collaborate and build relationships with multiple organizations that treat a variety of skin disorders. By doing so, we are able to expand the reach of the SJS/TEN patient community so they have access to added resources. Our skin, the largest organ in our body is the first introduction of oneself to the world. These organizations help to build SKIN confidence and define the skin you are in. Registered member with the National Organization for Rare Disease (NORD) since 2023. Canadian Skin has some valuable information in support of SJS click here for more. The Canadian Skin Patient Alliance (CSPA) is a national non-profit organization dedicated to advocating, educating and supporting Canadians living with skin diseases, conditions and traumas. They serve as an umbrella organization for Canadian patient groups and organizations that deal with specific skin disorders. By working together, they advocate for the needs of skin patients across the country and provide a broad range of education and support. Visit canadianskin.ca Founded on principles of patient-centered care and global collaboration, the World Patients Alliance (WPA) unites diverse patient organizations worldwide. With a steadfast commitment to empowering patients and improving healthcare outcomes, WPA facilitates dialogue among its extensive network of members spanning various health conditions and geographical locations. SJS Canada's inclusion as a Full Member underscores its dedication to enhancing patient support, education, and advocacy on an international scale. This milestone strengthens WPA’s mission to champion patient rights and amplify the collective voice of patients globally. The International Alliance of Dermatology Patient Organizations (IADPO – also known as GlobalSkin) is a unique global alliance, committed to improving the lives of skin patients worldwide. We nurture relationships with members, partners and all involved in healthcare ─ building dialogue with decision-makers around the globe to promote patient-centered healthcare. GlobalSkin works to empower its more than 167 patient organization members ─ located in 53 countries representing more than 60 disease areas ─ to reach more patients and provide them with greater support, education and advocacy. Visit globalskin.org Lupus Ontario is a dedicated provincial organization committed to improving the lives of those affected by lupus. We foster strong relationships with our members, partners, and everyone involved in healthcare, creating a dialogue with decision-makers across the region to promote patient-centered healthcare. Lupus Ontario strives to empower its extensive network of patient organization members, providing support, education, and advocacy to reach more patients and enhance their quality of life. With a focus on patient needs, we work tirelessly to offer greater resources and assistance to those living with lupus throughout Ontario. The National Organization for Rare Disorders (NORD) is a leading advocate for individuals and families affected by rare diseases, dedicated to improving their lives through advocacy, education, and support. NORD brings together a diverse network of patient organizations, healthcare partners, and stakeholders to foster dialogue and drive impactful change in rare disease care. Representing over 30 million Americans affected by rare diseases, NORD advocates for policies that advance research, accelerate treatment development, and ensure access to therapies. Visit rarediseases.org Streaming Praise Radio (sprlivefm.com) is Canada’s first gospel internet radio station, offering 24/7 Christian music and talk shows, including the popular Praise Life morning show. It supports diverse music genres and independent artists. The station is deeply involved in community initiatives and has embraced digital platforms with successful YouTube live-streaming shows. During the 2020 pandemic, it hosted its first annual organ donor awareness benefit virtual concert, highlighting its commitment to making a positive impact. Visit worldpatientsalliance.org Visit lupusontario.org Visit sprlivefm.com

SJS/TEN Canada Survivors' Handbook Download Handbook PDF

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Blog The Pain That Lingers: Understanding Chronic Pain After SJS/TEN When someone survives Stevens-Johnson syndrome (SJS) or toxic epidermal necrolysis (TEN), the focus in hospital is on getting through the acute illness: healing the skin, protecting the eyes, and preventing infection. Once the skin has regrown and the patient goes home, it is easy to assume the hardest part is over. For many survivors, it isn't. Pain can persist for months or even years after the reaction, affecting the eyes, mouth, skin, and daily life. Chronic pain is one o 2 days ago 5 min read Not All Drug Reactions Are the Same: How SJS/TEN Differs from OtherMedication Reactions By Kimia Ameri and Aziz Ghafoor August 28th, 2026 Every medication has the potential to cause side effects, and although most people tolerate medications without issue, some individuals may develop a reaction affecting the skin. The term ''drug rush'' is often used broadly, but in reality, drug reactions exist on a wide spectrum. Some are mild, uncomfortable, and resolve once the medication is stopp Aug 28 5 min read The Hidden Costs of Surviving SJS/TEN in Canada In Canada, we often take pride in our universal healthcare system. When a medical catastrophe like Stevens-Johnson Syndrome (SJS) or Toxic Epidermal Necrolysis (TEN) strikes, the immediate hospital costs, such as the ICU stay, the specialized burn unit care, and the life-saving interventions, are largely covered. However, for survivors, discharge from hospital does not signal the end of the condition or financial burden. In fact, for many, it is just the beginning. While the May 13 3 min read Karen Sgori’s SJS Story I was diagnosed in April of 2021 with SJS. I had started taking lamotrigine. I was on it for three weeks when I started to feel bad. It started with a high fever of 104. I went to the ER on April 16th, 2021, and all they did was test me for Covid. It was negative and they sent me home. The next day I did a televisit and that doctor put me on an antibiotic with sulfa in it. Two days later I went back to the ER feeling worse and getting a rash. Same thing tested me for Covid an May 10 2 min read The Unseen Emergency: Understanding Ocular Involvement in SJS/TEN When we talk about Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN), the immediate focus is often on the severe and visible impact on the skin. However, SJS/TEN is a mucocutaneous condition, meaning it attacks the mucous membranes just as aggressively. For up to 80% of patients, the eyes are directly on the front lines of this immune response. Because SJS/TEN is incredibly rare, bringing awareness to the different clinical topics within the disease is ess Mar 27 3 min read When a Rare Disease Is Missed: Misdiagnosis of Stevens–Johnson Syndrome and Why It Matters 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 common Feb 18 3 min read 1 2 3 4 5

Global SJS Awareness Month: August August – A Month of Awareness, Advocacy, and Action Every August, SJS Canada joins organizations and individuals around the world to recognize Global Stevens-Johnson Syndrome (SJS) Awareness Month. A time dedicated to shining a light on Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN). These rare but severe reactions, most often triggered by medications, can be life-threatening and leave survivors with long-term physical and emotional impacts. Why Awareness Matters Early recognition of symptoms is critical to improving outcomes. Increased awareness among the public and healthcare professionals can lead to faster diagnosis, better treatment, and fewer preventable cases. By educating others, we can help save lives and reduce suffering. Our Goals During Awareness Month Educate about the signs, risks, and long-term effects of SJS/TEN Empower survivors and families to share their stories and connect with others Advocate for safer prescribing practices and stronger patient protections Engage communities through events, campaigns, and social media outreach How You Can Get Involved Join our events – including our annual Virtual SJS/TEN Educational Webinar and Move/Walk/Run happening mid to late summer Share your story – Survivor voices bring powerful awareness and connection Spread the word on social media using our downloadable graphics and hashtags Attend our Canada Day booth at Lion’s Park in Brantford (July 1st) to kick off the conversation early Support our Membership Drive – Help us grow and sustain our work year-round Together, We Are Stronger SJS Awareness Month is not just about information—it’s about community, compassion, and action. Whether you're a survivor, caregiver, healthcare professional, or supporter, your voice SJS Awareness Month Activities | This is how you can join the fight. We have some activities during August that you can join to support us in our fight. Check them out.

Research Dr. O’Reilly and the research team at the University of Limerick are conducting a survey of Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis survivors. T heir research involves two rounds of surveys aiming to developing a Quality of Life (QoL) outcome measure specific for SJS/TEN patients. Existing general QoL outcome measures do not capture the specific experiences of SJS/TEN survivors; this tool may help more clinicians assess SJS/TEN survivors’ quality of life and identify areas of improvement. How to find out more and participate If you would like to learn more about the study or are interested in participating, please contact Professor Pauline O’Reilly at the Department of Nursing and Midwifery, University of Limerick. You can reach her via email at Pauline.OReilly@ul.ie. Click here to access the complete Research Information Sheet by Health Research Board Know more about the research 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. STUDIES ON GENETICS A research titled: – STUDIES ON GENETICS conducted by: Dr. Bruce Carleton Chair, Division of Translational Therapeutics Faculty of Medicine University of British Columbia As per Dr. Carleton, the central theme of his research program, Pharmaceutical Outcomes and Policy Innovations (POPi), is the study of drug therapy with the goal of improving human health and quality of life. He is interested in developing models for evaluating drug effectiveness, medication use models designed to improve patient health, and effective surveillance systems to improve the safe use of medication. He also has an interest in the clinical management of patients who experience serious adverse drug reactions. You can learn more about Dr. Carleton’s research program by emailing him at the email address listed below. FOR DETAILS ABOUT THIS RESEARCH PROJECT: Please email: bcarleton@popi.ubc.ca Survivors and family members of Stevens-Johnson Syndrome & Toxic Epidermal Necrolysis are encouraged to get involved The survey is ready! Dear colleague, As anticipated in our previous email from the COSTEN Project, we are pleased to announce the official launch of Round 1. The participation link is provided at the end of this email. Web-based Delphi questionnaire logistics and timeline The Delphi survey will be conducted using the web-based Welphi platform and will take place in 2-4 rounds, depending on the results of the preceding rounds. The first-round survey is now open from March 5th 2026 until March 20th, 2026, and is expected to take approximately 15 minutes to complete. The questionnaire can be completed over multiple sessions. Should you exit the survey before completion, your responses will be saved automatically, and upon returning, you will be taken back to the point where you left off. All answers and comments will be treated anonymously. Information regarding the second round will be shared with participants in the coming weeks, following analysis of the first-round responses. When accessing the platform, you will be reminded of the objective of this consensus study and provided with clear instructions regarding your participation. Each invited participant will receive a personalized link; please do not share it with others. To participate, please click the following link: app2.welphi.com//Pages/RedirectPage.aspx?sygNY5/UkxN9rAbu09Imn/BG454JHJcpuBHA1luMdc4= For scientific and other questions, please contact us at CostenProject@gmail.com Should you have any technical questions, please contact the Welphi team at Support@welphi.com Thank you very much, Best regards, Prof. Saskia Oro, MD Prof. Roni P. Dodiuk-Gad, MD On behalf of the COSTEN Project

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 SJS Brochure Read story 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 Application is no longer available.

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.