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Support Group Most often when an individual is trying to cope through challenging times, family members and friends may sympathize, but they don’t always know what to say or the best ways to help. Reasons to join our SJS/TEN Support Group: We care for supporters and SJS/TEN survivors on the recovery journey. The group was developed to connect those of us who are dealing with similar challenging circumstances—the long-term effects of SJS/TEN. Through sharing our experiences, we can offer support, encouragement, and comfort to each other and receive the same in return. The SJS/TEN recovery journey can be very challenging. Therefore, one of the best medicines is often the voice of people who have been in your shoes. Our monthly meetings allow personal conversations with expert medical specialists in the SJS/TEN field. Our Support Group is a safe and nurturing space where individuals come together to share experiences, encouragement, and foster personal growth. Our mission is to empower each member their journey to better health through connection, understanding, and shared resources. Join us as we support one another in achieving our wellness goals and building a healthier future together. Read more about SJS treatment info@sjscanada.org Name Email Subject Your message Send Thanks for submitting!

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

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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A brief history Stevens-Johnson Syndrome Canada (SJSC aka SJS Canada) is a registered, non-profit organization dedicated to spreading awareness about Stevens-Johnson Syndrome, an extremely rare life-threatening medical illness. SJS Canada was born in the heart of an SJS/TEN survivor, Sonia Whyte-Croasdaile, in 2012. She battled SJS/TEN for almost 6 weeks and survived a near-death experience. While in the hospital, she was informed that SJS/TEN was rare. To her dismay, she faced multiple obstacles in her quest for psychological support. There were no resources available in Canada to support her journey to recovery. The local doctors and specialists she visited had not encountered SJS before. Some had not even heard of the disease. She had no one or nowhere to turn to for support as she encountered drastic changes to her physical appearance. Sonia purposed within her heart that no other Canadian should travel this journey alone. With the help of her supportive family and friends, SJS Canada was formed. Her miraculous survival inspired her to create a well-needed outlet to spread awareness about this life-threatening medical illness that burns the body from the inside out. SJS Canada is a registered and dedicated non-profit organization committed to raising awareness, providing support, and advocating for individuals affected by Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) in Canada and around the world. The organization aims to educate the public, healthcare professionals, and policymakers about these rare and life-threatening conditions to improve patient outcomes and quality of life. Key Objectives following our Strategic Directions: 1. Awareness: SJS Canada works tirelessly to increase public and professional awareness of SJS/TEN, highlighting the importance of early diagnosis and appropriate treatment. Through campaigns, events, and educational resources, the organization strives to ensure that SJS is recognized and treated promptly to prevent severe complications. 2. Support: The organization offers crucial support to patients, survivors, and their families. This includes emotional support, information on managing the condition and connecting individuals with medical experts and fellow survivors. SJS Canada provides resources that help patients/survivors navigate the challenges of living with SJS/TEN, from initial diagnosis to long-term recovery. 3. Advocacy: SJS Canada advocates for improved healthcare policies and practices related to the diagnosis, treatment, and management of SJS/TEN. The organization collaborates with healthcare professionals, researchers, and policymakers to promote better understanding and care for those affected. 4. Research: By supporting and promoting research, SJS Canada contributes to advancing medical knowledge about SJS/TEN. The organization is involved in initiatives that aim to discover more about these conditions' causes, prevention, and treatment. Programs and Services: - Educational Outreach: SJS Canada conducts educational programs and workshops to inform healthcare providers, students, and the general public about SJS/TEN. These initiatives are crucial for fostering early recognition and improving patient care. - Patient and Family Support: The organization offers resources such as support groups, online communities, and one-on-one assistance to help patients and families worldwide cope with the emotional and physical challenges of SJS/TEN. - Awareness Campaigns: Throughout the year, especially during SJS Awareness Month, SJS Canada organizes campaigns to raise visibility for the condition, share survivor stories, and educate the public on identifying and responding to SJS/TEN. - Advocacy Efforts: SJS Canada engages with government bodies and healthcare institutions to advocate for policies that improve patient care, support research, and ensure access to necessary treatments. Incidence, Impact and Challenges in Canada: SJS is extremely rare, with an estimated incidence of 1 to 6 cases per million people per year in Canada. Due to its rarity, awareness among healthcare professionals and the public is crucial for early diagnosis and treatment. SJS Canada has been making a significant impact by connecting patients and families with vital resources, advocating for improved healthcare practices, and fostering a supportive community for those affected by SJS/TEN. Their efforts have helped to bring SJS/TEN into the spotlight, ensuring that more people are aware of these conditions and that patients receive the care they need. - Awareness: Despite its severity, SJS is not widely known, leading to potential delays in diagnosis and treatment. - Support Systems: Patients may face long-term complications, including vision problems, skin scarring, and psychological effects, necessitating ongoing medical and emotional support. - Research and Advocacy: Efforts are ongoing in Canada to increase awareness, improve treatment protocols, and support research into the causes and prevention of SJS. On the whole, SJS Canada continues to be a vital resource for individuals affected by Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis. Through its comprehensive approach—spanning awareness, support, advocacy, and research—the organization plays a crucial role in improving the lives of those affected by these severe conditions in Canada and globally. We are dedicated to providing support for survivors, family, friends, and caregivers in the SJS/TEN community. Be part of our community and make the difference. Our Mission Our Mission: Supporting survivors and promoting global SJS/TEN education, advocacy, and research for prevention and treatment. Our Vision: A world where SJS/TEN is widely recognized, understood, cured and prevented. SJS Canada Values: SJSC upholds respect, transparency, accountability, collaboration, fostering empowerment and accessibility, and providing support for those affected by Stevens-Johnson Syndrome/TEN SJS Canada Aims: Promote health by providing people suffering from SJS/TEN as well as their families and caregivers with access to related counselling, support groups and information programs. To advance education by providing workshops, forums and seminars about the SJS/TEN to the public and medical professionals. SJS Canada Strategic Directions: 1 Sustainability, Fundraising, Networking & Collaboration SJSC is committed to: sustainability in financial planning and management. gaining multiple sources of sustainable funds. building networks and partnerships with organizations. 2 Education & Awareness SJSC is committed to raising awareness through education of survivors, medical and general communities. 3 Marketing & Communications: SJSC is committed to developing our marketing and communication strategy to increase our reach.

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Active Campaigns SJS Canada Virtual “Move-a-Thon” Fundraiser 2024 Register Here Join the SJS Move-a-Thon 2024 Fundraiser: Move for Those Who Can't From August 16-19, we invite you to be a part of something truly meaningful. Across Canada and the United States, people will be walking, running, or biking to support survivors of Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN). These rare, but devastating skin conditions change lives forever. Together, we can help them on their journey to recovery. Move for Those Who Can't Imagine the unimaginable pain of your skin burning from the inside out. This is the reality for those suffering from SJS/TEN. Many survivors are left with lifelong consequences that make it difficult or impossible to move freely. By participating in the SJS Move-a-Thon, you are not just moving your body; you are moving hearts and minds towards a cause that needs your support. Why Participate? Your participation in the Move-a-Thon sends a powerful message of solidarity and hope to survivors of SJS/TEN. Every step you take, every mile you bike, directly contributes to providing survivors with essential resources such as supportive counseling, educational sessions, and genetic testing through partnerships with health professionals. Your efforts help to rebuild lives and restore hope. Join us in this journey of compassion and action. Let’s come together to make a tangible difference. Your support will provide survivors with the care and support they desperately need, showing them they are not alone. How You Can Help: Participate: Walk, run, step, bike or move from August 16-19. Donate: Make a secure donation and help us reach our goal (campaign ends Sept, 2024) Spread the Word: Follow us on social media for updates and share our cause with your community. Together, we can bring awareness to SJS/TEN, support survivors, and make a real difference. Let’s move for those who can't. Join the SJS Move-a-Thon and be a part of a movement that changes lives. WE THANK YOU IN ADVANCE FOR YOUR SUPPORT. Join us in the fight against the disease that burns the body from the inside out because TOGETHER, WE ARE STRONGER . Contact Us Help us on this fight! Donate Now

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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.

Find a Doctor Do you need help finding an SJS/TEN Doctor In your area? We can help you! Send us a message and we’ll get back to you shortly. First name Phone Email Location Your message Send Thanks for submitting! We'll contact you shortly. Are you a Doctor? Full Name Email Code Phone Speciality Location Your message Send Thanks for submitting! We'll contact you shortly. Do you want to register to be in our SJS/TEN Doctor's referral list? Register here.

Events Calendar May 2026 Today Mon Tue Wed Thu Fri Sat Sun 27 28 29 30 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 3:30 PM SJSC Support Group 21 22 23 24 25 26 27 28 29 30 31 1 2 3 4 5 6 7

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.