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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

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Newsletter SJSC Summer 2024 Newsletter Download SJSC 2023 Year-End Newsletter Download SJSC Spring 2024 Newsletter Download

In Memoriam

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 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

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

SJS/TEN Canada Survivors' Handbook Download Handbook PDF

Upcoming Events Multiple Dates SJSC Support Group Wed, Sep 17 Virtual Zoom online Conference More info RSVP Events Calendar September 2025 Today Mon Tue Wed Thu Fri Sat Sun 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 3:30 PM SJSC Support Group +1 more 18 19 20 21 22 23 24 25 26 27 28 29 30 1 2 3 4 5 6 7 8 9 10 11 12 Past Events Thu, Aug 28 SJS Webinar- Global Connections / Online: Virtual Zoom online Conference Details Aug 28, 2025, 7:00 PM – 9:00 PM Online: Virtual Zoom online Conference +22 more Multiple Dates Wed, Aug 20 SJSC Support Group / Virtual Zoom online Conference Details Aug 20, 2025, 3:30 PM – 4:30 PM EDT Virtual Zoom online Conference +14 more Fri, Aug 15 SJS Virtual Move-A-Thon / Zoom Details Aug 15, 2025, 7:00 AM – Aug 17, 2025, 11:00 PM Zoom Join Us for the SJS/TEN Awareness Virtual Walk-a-Thon See All Mon, May 05 Annual General Meeting (AGM) 2025 / Zoom Meeting Details May 05, 2025, 6:30 PM – 8:00 PM EDT Zoom Meeting +28 more Multiple Dates Wed, Apr 09 Elpizo Counseling / Zoom Details Apr 09, 2025, 6:00 PM – 7:30 PM EDT Zoom Tue, Feb 25 SJS Canada February Webinar / Zoom Details Feb 25, 2025, 7:00 PM – 9:00 PM Zoom +70 more Wed, Jan 15 SJSC Support Group / https://us02web.zoom.us/j/82137370516?pwd=W Details Jan 15, 2025, 3:30 PM – 4:30 PM https://us02web.zoom.us/j/82137370516?pwd=W See All Multiple Dates Wed, Dec 18 SJSC Support Group / https://us02web.zoom.us/j/82137370516?pwd=W Details Dec 18, 2024, 3:30 PM – 4:30 PM https://us02web.zoom.us/j/82137370516?pwd=W Sun, Dec 08 Season of Hope Benefit Event / Virtual Zoom Event Details Dec 08, 2024, 6:00 PM – 8:30 PM EST Virtual Zoom Event Join us for an unforgettable night of live performances, fun and entertainment at the Season of Hope Benefit. +14 more Multiple Dates Wed, Dec 04 ElPizo Counseling / https://2ly.link/20Ymj Details Dec 04, 2024, 6:00 PM – 7:30 PM EST https://2ly.link/20Ymj Thu, Aug 29 SJS Awareness Month Town Hall / Zoom Town Hall Details Aug 29, 2024, 7:30 PM – 9:00 PM Zoom Town Hall +26 more Thu, Jul 11 Games Night - Virtual Edition / ZOOM Details Jul 11, 2024, 6:00 PM – 8:30 PM ZOOM Mon, Jul 01 SJSC Canada Day Booth | Free Event / Brantford Details Jul 01, 2024, 10:00 AM – 10:00 PM Brantford, Brantford, ON, Canada Thu, Jun 20 Game Night - Virtual Edition / ZOOM Details Jun 20, 2024, 6:00 PM – 8:30 PM ZOOM Sun, May 05 Annual General Meeting (AGM) / Zoom Meeting Details May 05, 2024, 3:30 PM – 5:00 PM EDT Zoom Meeting +19 more Thu, Apr 18 ElPizo Counseling / https://us02web.zoom.us/j/82137370516?pwd=W Details Apr 18, 2024, 6:30 PM – 7:30 PM EDT https://us02web.zoom.us/j/82137370516?pwd=W Thu, Apr 11 ElPizo Counseling / https://us02web.zoom.us/j/82137370516?pwd=W Details Apr 11, 2024, 6:30 PM – 7:30 PM EDT https://us02web.zoom.us/j/82137370516?pwd=W Thu, Feb 29 SJS Canada February Town Hall Event / Virtual Event - Zoom Details Feb 29, 2024, 7:30 PM – 9:00 PM EST Virtual Event - Zoom +36 more Load More We Need Your Support Today! Donate

Donations Thank you for your support! Your donation will greatly assist us. During the past few years, the pandemic impacted some of our programs, however, we were able to pivot to online and virtual meeting spaces! This has given rise to a series of Town Hall meetings featuring guest speakers and medical professionals, SJS/TEN conferences, public speaking engagements, and other virtual events including our annual SJS virtual fundraising concerts! Our monthly survivors' support group meets online and co-hosts counselling workshops. Over the next 5 years, we are aiming to expand on these services and incorporate new ones to further the support, assistance, and education of Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis. No one should have to journey through this alone; we are stronger together! Your donations will help us to continue the important work of supporting survivors and caregivers, as well as to promote awareness and education of these rare skin diseases. Click Here to Donate Donate a Car Donate a Car Canada accepts Vehicle Donations for SJS Canada. Donate a Car Donate a Car Canada accepts vehicle donations for SJS Canada. Free towing is provided in most areas across Canada, or you can drop off your vehicle to maximize your donation. When you donate your car, truck, RV, boat, or motorcycle to SJS Canada, it will either be recycled or re-sold (depending on its condition, age and location). Donate a Car Canada will look after all the details to make it easy for SJS Canada to benefit. You will receive a tax receipt after your donation has been processed! Car Donation SJS Canada is partnering with Donate a Car Canada to accept your car donation! You will be provided free towing, or you can drop off your vehicle to maximize your donation. When you donate your car, truck, RV, boat, or motorcycle to SJS Canada through Donate A Car Canada, it will either be recycled or re-sold (depending on its condition, age and location). Donate a Car Canada will look after all the details to make it easy for SJS Canada to benefit. You will receive a tax receipt after your car donation has been processed! Vehicle Donation SJS Canada is partnered with Donate a Car Canada to accept your vehicle donation! You will be provided free towing, or you can drop off your vehicle to maximize your donation. When you donate your car, truck, RV, boat, or motorcycle to SJS Canada through Donate A Car Canada, it will either be recycled or re-sold (depending on its condition, age and location). Donate a Car Canada will look after all the details to make it easy for SJS Canada to benefit. You will receive a tax receipt after your vehicle donation has been processed! Junk Car Your junk car can help SJS Canada! We have partnered with Donate a Car Canada to accept your car donation. You will be provided free towing, or you can drop off your vehicle to maximize your donation. When you donate your car, truck, RV, boat, or motorcycle to SJS Canada through Donate A Car Canada, it will either be recycled or re-sold (depending on its condition, age and location). Your vehicle may not be a junk car, and they can help with that, too! Donate a Car Canada will look after all the details to make it easy for SJS Canada to benefit. You will receive a tax receipt after your vehicle donation has been processed! Car Removal Looking for simple and free car removal? SJS Canada is partnering with Donate a Car Canada to accept your car donation! You will be provided free towing, or you can drop off your vehicle to maximize your donation. When you donate your car, truck, RV, boat, or motorcycle to SJS Canada through Donate A Car Canada, it will either be recycled or sold at auction (depending on its condition, age and location). Donate a Car Canada will look after all the details, from car removal to the disbursal of your gift, making it easy for you and SJS Canada to benefit. You will receive a tax receipt after your vehicle donation has been processed! Donate Your Car Here

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.

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 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 TBA 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 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. Seema Mane-Kndvilkar TBA TBA 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. Felipe Cayres Web Developer and Team Lead Manage web development at SJS Canada. Lead a team, ensure compliance, and improve user experience. Using technology for better health outcomes. Kevin Kim Patient Support Coordinator Since March 2023, he has been organizing monthly support group meetings for SJS/TEN survivors and loved ones affected. He also organizes expert guest speakers who present on, and answer questions about, the long-term challenges faced by the patient support group members. He has also spearheaded writing and producing a SJS/TEN Patient Handbook with input from SJS survivor and experts in the field. He hopes to continue expanding the role of Patient Support Coordinator. Outside of SJS Canada, Kevin is a MD/PhD student at McMaster University, Hamilton, Ontario aspiring to be a physician-scientist caring for those affected by complex dermatologic conditions and improving their care. Aria Momand Fundraising Coordinator TBA Farzan Rezayati Ajibisheh Marketing and Communications Coordinator TBA Tyanna Supreme Grant Team Coordinator She is a PhD candidate in Molecular Genetics at the University of Toronto. As part of the grant writing team, she brings a strong scientific foundation to help SJS Canada secure more funding to better support the community. Tyanna is deeply passionate about mentorship and volunteer work, particularly in Black spaces, where she strives to foster empowerment and connection. She is committed to continuing her learning about Stevens-Johnson Syndrome and raising greater awareness of the disease. Advisory Committee Karen Worthy PhD, MPH, RN, CNE Dr. Karen Worthy is an Associate Professor at the University of South Carolina College of Nursing. Dr. Worthy has a 26-year history in professional nursing and has been a nurse educator for 17 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

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.