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 of the least recognized long-term effects of SJS/TEN and understanding it can help survivors get the care they need.1 How Common Is Chronic Pain After SJS/TEN? Pain during the acute phase of SJS/TEN is expected and usually fades over a few months as the skin recovers. In some people, though, it never fully goes away. A study followed 81 survivors and interviewed them more than a year after their reaction. More than one in three (36%) still had chronic pain, and for these patients it had lasted a median of about 4.4 years.1 Other studies of survivors point in the same direction. In a Canadian study of 17 survivors, about a quarter reported ongoing eye pain or mouth discomfort, over half had persistent itching, and 27% of women experienced chronic vulvovaginal pain.3 A larger US survey of 121 survivors found that long-term problems affecting the skin (84%), eyes (60%), and mouth (51%) were very common, the same parts of the body where survivors in other studies most often reported pain.1,4 Where Does It Hurt? Chronic pain after SJS/TEN tends to affect a smaller area than the original reaction did. The eyes were the most commonly affected site, followed by the legs, mouth, and feet.1 Pain Location Survivors Affected Eyes 55% Lower limbs 41% Mouth 38% Feet 38% Hands 28% Trunk 28% Upper limbs 17% Genital/perineal area 14% On average, survivors rated their daily pain as moderate (4.7 out of 10), with peaks reaching about 7 out of 10. For most, the pain was not constant: 59% had pain for less than 8 hours a day. It was often worse in the evening, with movement, or in the heat, and it tended to ease with rest or overnight.1 What Does It Feel Like? Survivors most often described the pain as burning or itching, followed by tingling. Many also experienced pain from light touch or pressure, such as clothing brushing against the skin, which doctors call mechanical allodynia. Pain triggered by cold, by contrast, was essentially absent.1 One striking finding was how strongly the pain was tied to emotion. Survivors rated their pain much higher on emotional descriptors, such as exhausting, dreadful, and depressing, than on physical descriptors like stabbing or electric shock. Pain interfered most with general activity, mood, and work, and less with sleep or walking.1 Who Is Most at Risk? The severity of the original illness appears to matter. Compared with survivors who were pain-free, those with chronic pain had:1 • A larger area of skin detachment (median 17.5% vs. 9.5% of the body). • Higher SCORTEN severity scores. • More ICU admissions (52% vs. 6%). • More complications during their hospital stay (66% vs. 29%). • Longer hospital stays (median 21 vs. 11 days). • Much higher rates of severe emotional distress (72% vs. 12%). Why Does the Pain Persist? There are likely several mechanisms involved. The outer layer of skin contains the tiny nerve endings that sense pain and temperature. When this layer detaches and regrows, those nerves are damaged and must regenerate, which could leave them oversensitive.1 Ongoing inflammation, particularly in the eyes and mucous membranes, may also contribute.1 Nerve damage alone, however, does not seem to explain the whole picture. In a follow-up study, the same group tested nerve function in 10 survivors with chronic pain. Half showed damage to their small nerve fibres, but their pain was no different from the half whose nerve tests were normal.2 The emotional impact of SJS/TEN appears to play a major role. Surviving a sudden, life-threatening reaction is traumatic. In a survey, 53% of survivors screened positive for depression, 43% for anxiety, and nearly 20% for post-traumatic stress disorder (PTSD).4 In a recent study where survivors shared their experiences in their own words, many described anxiety, flashbacks, exhaustion, and feeling alone once they left the hospital.5 Researchers have proposed that, for many survivors, chronic pain may be closely linked to post-traumatic stress, similar to what is seen after severe burns.1 This does not mean the pain is “all in your head.” Physical pain and emotional trauma are deeply connected, and both are real and treatable. Getting the Right Care Chronic pain after SJS/TEN often goes untreated. Few survivors with chronic pain were taking medications that target nerve pain or mood, and many relied on skin creams (62%) and eye drops (38%) for relief.1 Researchers suggested that treatment should be tailored to the type of pain. Nerve-related symptoms such as burning or pain from light touch may respond to medications used for nerve pain, while pain linked to depression or PTSD may be better addressed with antidepressants or psychotherapy.1 Many survivors also fall through the cracks after discharge. 67% of survivors had eye complications, yet only 6% were being followed by an eye specialist.3 Fear of medications is another barrier: 68% of survivors in a survey study were afraid of taking new medications, and 30% avoided medications prescribed for a diagnosed condition.4 Survivors have described having to coordinate their own care, and many said mental health support should be a routine part of discharge planning.5 When Should You Talk to Your Doctor? If you have survived SJS/TEN, speak with your healthcare provider if you experience: • Pain that continues months after your skin has healed. • Eye pain, redness, dryness, or changes in vision. • Burning, tingling, or pain from light touch. • Mouth pain or difficulty eating. • Genital pain or pain during intercourse. • Low mood, anxiety, flashbacks, or nightmares. • Fear of medications that is stopping you from getting treatment. A specialist such as a dermatologist, ophthalmologist, gynecologist, pain specialist, or mental health professional can help, and your doctor can work with you to identify which medications are safe for you. Final Thoughts Surviving SJS/TEN is only the beginning of recovery. Chronic pain affects more than a third of survivors, can last for years, and is closely tied to both the severity of the original illness and its emotional toll. Recognizing that this pain is common and real, and that it involves both body and mind, is the first step toward better care. Proper follow-up and a treatment approach that addresses both physical and psychological needs give survivors the best chance at relief. References 1. Lefaucheur JP, Valeyrie-Allanore L, Ng Wing Tin S, Abgrall G, Colin A, Hajj C, de Prost N, Wolkenstein P, Ingen-Housz-Oro S, Chosidow O. Chronic pain: a long-term sequela of epidermal necrolysis (Stevens–Johnson syndrome/toxic epidermal necrolysis) – prevalence, clinical characteristics and risk factors. Journal of the European Academy of Dermatology and Venereology. 2021 Jan;35(1):188-94. 2. Lefaucheur JP, Hajj C, Valeyrie-Allanore L, Colin A, Ng Wing Tin S, de Prost N, Wolkenstein P, Chosidow O, Ingen-Housz-Oro S. Involvement of small-diameter nerve fibres in long-term chronic pain after Stevens–Johnson syndrome or toxic epidermal necrolysis. A neurophysiological assessment. Journal of the European Academy of Dermatology and Venereology. 2021 Mar;35(3):e218-20. 3. Olteanu C, Shear NH, Chew HF, Hashimoto R, Alhusayen R, Whyte-Croasdaile S, Finkelstein Y, Burnett M, Ziv M, Sade S, Jeschke MG, Dodiuk-Gad RP. Severe physical complications among survivors of Stevens–Johnson syndrome and toxic epidermal necrolysis. Drug Safety. 2018 Mar;41(3):277-84. 4. Hoffman M, Chansky PB, Bashyam AR, Boettler MA, Challa N, Dominguez A, et al. Long-term physical and psychological outcomes of Stevens-Johnson syndrome/toxic epidermal necrolysis. JAMA Dermatology. 2021 Jun;157(6):712-5. 5. Martin-Pozo MD, Williams EA, Bonnet KR, Kaffenberger BH, Schlundt DG, Phillips EJ. Recovering from Stevens-Johnson syndrome and toxic epidermal necrolysis. JAMA Dermatology. 2026 Jan;162(1):24-30.

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 stopped, while others are rare, life-threatening medical emergencies requiring immediate hospitalization. Understanding the differences between common drug reactions and severe cutaneous adverse reactions (SCARs) can help patients recognize warning signs and know when to seek urgent medical care. Although Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) are among the rarest drug reactions, they are also among the most serious. Common Drug Reactions Most medication-related skin reactions are mild and improve after the offending medication is discontinued. While they should always be discussed with a healthcare provider, they generally do not cause permanent damage. 1. Maculopapular (Exanthematous) Rash The most common type of drug reaction is a maculopapular (or exanthematous) eruption. It usually appears 1-2 weeks after starting a new medication and presents as widespread flat red patches with small raised bumps, most often beginning on the trunk before spreading to the arms and legs. These rashes are often mildly itchy but are typically not painful and rarely involve the mouth, eyes, or other mucous membranes. Most cases resolve within days to weeks after the medication is stopped. 1,2stopped. 1,2 2. Urticaria (Hives) Urticaria, commonly known as hives, consists of raised, intensely itchy welts that can appear within minutes to hours after taking a medication. The rash often changes location throughout the day and may be accompanied by swelling of the lips, eyelids, or face (angioedema). Although hives themselves are usually not dangerous, swelling involving the tongue or throat, difficulty breathing, or symptoms of anaphylaxis require immediate emergency medical attention.¹ ,2 3. Fixed Drug Eruption A fixed drug eruption is a distinctive reaction that causes one or several sharply defined red or purple patches that repeatedly develop in the same location whenever the responsible medication is taken. After healing, these areas often leave behind dark discoloration of the skin. While uncomfortable, fixed drug eruptions are generally localized and much less severe than SJS/TEN. ¹ ,2 Severe Cutaneous Adverse Reactions (SCARs) A small proportion of medication reactions belong to a group known as severe cutaneous adverse reactions (SCARs). Unlike common drug rashes, SCARs are medical emergencies because they may affect not only the skin, but also the eyes, mouth, internal organs, and immune system. Prompt recognition and immediate discontinuation of the offending medication are critical. 3 1. Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) SJS and TEN are rare but potentially life-threatening reactions in which the immune system attacks the skin and mucous membranes. Symptoms often begin with fever, fatigue, sore throat, or flu-like symptoms, followed by the development of painful red or purple skin lesions that blister and peel. Painful sores commonly affect the mouth, eyes, nose, and genital area, and extensive skin loss may occur. 1,3,4 Doctors distinguish SJS and TEN based on the amount of skin detachment. SJS involves less than 10% of the body surface area, TEN involves more than 30%, and cases between these ranges are considered SJS/TEN overlap. Because these reactions can rapidly progress and affect multiple organs, patients typically require care in specialized burn units or intensive care settings. 1,3,4 2. DRESS Syndrome Drug Reaction with Eosinophilia and Systemic Symptoms (DRESS) is another severe delayed drug reaction. Unlike SJS/TEN, DRESS usually develops 2-8 weeks after starting a medication, making it one of the latest drug reactions to appear. Patients often develop a widespread rash together with fever, facial swelling, enlarged lymph nodes, abnormal blood tests, and inflammation of internal organs, particularly the liver. Recovery can take weeks to months, and careful long-term follow-up is often required.¹ ,3,5 3. Acute Generalized Exanthematous Pustulosis (AGEP) AGEP is characterized by the sudden appearance of hundreds of tiny, sterile pustules on red, swollen skin, usually accompanied by fever. Unlike DRESS, AGEP often develops within one to several days of starting the offending medication. Although the rash can appear dramatic, it usually improves rapidly after the medication is stopped and is generally associated with a better prognosis than SJS/TEN or DRESS.¹ ,3,6 How Is SJS/TEN Different? Although SJS/TEN may initially resemble a common drug rash, several warning signs distinguish it from more typical medication reactions. Feature Common Drug Rash SJS/TEN Skin is itchy Often Sometimes Skin is painful Rare Common Fever Uncommon Common Blisters Rare Common Mouth or eye sores Rare Common Skin peeling Rare Common Requires emergency care Usually no Yes One of the most important differences is that SJS/TEN is typically painful rather than simply itchy. Many patients experience skin tenderness before blisters even appear. Painful sores affecting the mouth, eyes, or genitals, together with fever or flu-like symptoms, should never be ignored, particularly if a new medication was started within the previous several weeks. 1,3. When Should You Seek Emergency Care? Most medication rashes are not emergencies, but you should seek immediate medical attention if a new rash develops after starting a medication and is accompanied by: Fever or flu-like symptoms Painful skin Blisters or skin peeling Painful sores in the mouth, eyes, or genital area Eye redness, pain, or changes in vision Difficulty swallowing or eating Rapidly spreading rash Feeling significantly unwell Early recognition and prompt discontinuation of the offending medication can be lifesaving in severe drug reactions. Final Thoughts Most drug-related skin reactions are mild and resolve after the offending medication is discontinued. However, severe cutaneous adverse reactions such as SJS/TEN, DRESS, and AGEP are fundamentally different conditions that require urgent medical evaluation. Knowing the warning signs, particularly painful skin, mucosal involvement, fever, and blistering, can help patients seek care before these reactions progress. References 1. Del Pozzo‐Magaña BR, Liy‐Wong C. Drugs and the skin: A concise review of cutaneous adverse drug reactions. British Journal of Clinical Pharmacology. 2024 Aug;90(8):1838-55. 2. Crisafulli G, Franceschini F, Caimmi S, Bottau P, Liotti L, Saretta F, Bernardini R, Cardinale F, Mori F, Caffarelli C. Mild cutaneous reactions to drugs. Acta Bio-Medica: Atenei Parmensis. 2019 Jan 28;90(3-S):36-43. 3. Tempark T, John S, Rerknimitr P, Satapornpong P, Sukasem C. Drug-induced severe cutaneous adverse reactions: insights into clinical presentation, immunopathogenesis, diagnostic methods, treatment, and pharmacogenomics. Frontiers in pharmacology. 2022 Apr 20;13:832048. 4. Watanabe H, Ogawa Y, Yamaguchi Y, Nakajima S, Mizukawa Y, Mushiroda T, Takahashi H, Fujiyama T, Sotozono C, Kaneko Y, Hasegawa A. Guidelines for the management of stevens–johnson syndrome and toxic epidermal necrolysis 2025 supplement. The Journal of Dermatology. 2026 Feb;53(2): e88-101. 5. Calle AM, Aguirre N, Ardila JC, Villa RC. DRESS syndrome: a literature review and treatment algorithm. World Allergy Organization Journal. 2023 Mar 1;16(3):100673. 6. Thienvibul C, Vachiramon V, Chanprapaph K. Five‐year retrospective review of acute generalized exanthematous pustulosis. Dermatology Research and Practice. 2015;2015(1):260928.

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 acute phase is a medical emergency, the recovery phase is a financial one. From specialized vision care to the loss of professional stability, the "hidden" costs of SJS/TEN create a lifetime of economic strain that our current healthcare safety nets often fail to catch. Beyond the Hospital Walls: The Out-of-Pocket Reality SJS/TEN is a multi-system disease. Once the skin heals, the chronic sequelae begin to manifest in the eyes, mouth, and internal organs. In Canada, the "gaps" in universal coverage, specifically dental, vision, and outpatient medications, become significant hurdles. Survivors often face: - Vision Problems: Specialized scleral lenses, which are essential for many survivors to maintain sight and manage chronic pain, can cost thousands of dollars and are not consistently covered by provincial plans.1 - Dental Reconstruction: The mucosal damage can lead to severe dental decay and tooth loss, requiring extensive oral surgery and prosthetics.1 - Prescription Medications: Chronic dry eye drops, immunosuppressants, and topical treatments may result in high monthly costs for those for which provincial coverage is not available and without robust private insurance.2 The Geographic Burden: Travel and Tertiary Care Because SJS/TEN is exceptionally rare, expertise is concentrated in major urban tertiary centers (such as those in Toronto, Vancouver, or Montreal). For Canadians living in rural areas or smaller provinces, "recovery" involves frequent, long-distance travel. These costs like fuel, flights, hotels, and meals, are rarely subsidized, forcing some families to choose between financial stability and expert medical consultation.1 The Economic Ripple Effect: Work and Caregiving Recent international data highlights a sobering reality: SJS/TEN significantly impacts lifetime earnings and life expectancy.3,4 Research indicates that the lifetime healthcare expenditure is disproportionately high for survivors compared to the general population.4 In a Canadian context, this is exacerbated by: - Loss of Income: Prolonged hospitalizations and chronic pain often lead to extended leaves of absence or permanent disability.1,3 - Caregiver Burden: Family members often must reduce their working hours or quit jobs entirely to provide the intensive daily care required during the first year of recovery, as seen in other serious autoimmune conditions.5 - Psychological Support: The trauma of SJS/TEN is profound. Mental health services, which are largely private in Canada, represent a critical but expensive necessity for long-term survival.1 Rare diseases like SJS/TEN create a unique financial strain. The scarcity of specialists means survivors don't just pay with their health; they pay with their mobility, their careers, and their long-term financial security. A Call for Comprehensive Support Surviving SJS/TEN should not mean entering a cycle of poverty. While our public system saves lives in the acute phase, we must advocate for better coverage for the chronic phase. Recognizing SJS/TEN as a lifelong condition requires us to look beyond the ICU and ensure that vision, dental, and psychological care are accessible to every survivor, regardless of their postal code or insurance status.3,4 References Martin-Pozo MD, Williams EA, Bonnet KR, Kaffenberger BH, Schlundt DG, Phillips EJ. Recovering from stevens-johnson syndrome and toxic epidermal necrolysis. JAMA Dermatology. 2026 Jan;162(1):24-30. Dilokthornsakul P, Sawangjit R, Inprasong C, Chunhasewee S, Rattanapan P, Thoopputra T, Chaiyakunapruk N. Healthcare utilization and cost of Stevens-Johnson syndrome and toxic epidermal necrolysis management in Thailand. Journal of Postgraduate Medicine. 2016 Apr 1;62(2):109-14. Liu Y, Li Q, Chu C, Zhou Y. Insights into Stevens–Johnson syndrome/toxic epidermal necrolysis lifetime burden: assessing life expectancy, healthcare costs and quality of life. British Journal of Dermatology. 2023 Nov;189(5):648-. Chiu YM, Chiu HY. Lifetime risk, life expectancy, loss-of-life expectancy and lifetime healthcare expenditure for Stevens–Johnson syndrome/toxic epidermal necrolysis in Taiwan: follow-up of a nationwide cohort from 2008 to 2019. British Journal of Dermatology. 2023 Nov;189(5):553-60. Barber M, St-Pierre Y, Bernatsky S, Vinet É, Urowitz M, Gladman D, Peschken C, Hanly J, Legge A, Fortin P, Clarke A. The Forgotten Costs of SLE: Estimating Indirect Costs in a National SLE Cohort. InThe Journal of Rheumatology 2025 Jul 1 (Vol. 52, No. Suppl 2, pp. 18-18). The Journal of Rheumatology.

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