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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.

I was diagnosed in April of 2021 with SJS. I had started taking lamotrigine. I was on it for three weeks when I started to feel bad. It started with a high fever of 104. I went to the ER on April 16th, 2021, and all they did was test me for Covid. It was negative and they sent me home. The next day I did a televisit and that doctor put me on an antibiotic with sulfa in it. Two days later I went back to the ER feeling worse and getting a rash. Same thing tested me for Covid and sent me home. Of course that’s all you could have back then. On April 23, 2021, around 3:00 in the morning my husband called 911. I was totally out of it. Now my body is covered in blisters, I couldn’t see and was in excruciating pain. They did a biopsy on my belly and that confirmed I had SJS. They had to find an ICU bed in the burn unit and the closest one was in Galveston, TX which is 1 1/2 hours away from our home. It was the most painful thing I’ve ever been through and wouldn’t wish it on anyone. I know if they caught it sooner, I may not have the eye issues I have but I also know that I didn’t have it nearly as bad as others. I just can’t imagine it being worse. I am a Flight Attendant, and I have been off for six months. I should’ve been off longer, but I needed to work to make money. It’s a challenge every day with my eyes but I and so blessed they healed as much as they did. My tear ducts are scarred, and I cannot cry or produce any moisture in my eyes. I am thankful for scleral lenses. They are uncomfortable to wear but not having them in my eyes is worse.

When we talk about Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN), the immediate focus is often on the severe and visible impact on the skin. However, SJS/TEN is a mucocutaneous condition, meaning it attacks the mucous membranes just as aggressively. For up to 80% of patients, the eyes are directly on the front lines of this immune response.   Because SJS/TEN is incredibly rare, bringing awareness to the different clinical topics within the disease is essential. Understanding the acute and long-term ocular impacts of SJS/TEN can help ensure patients get the specialized care they need from day one.   The Acute Phase: A Race Against Time In the early days of an SJS/TEN reaction, ocular involvement might initially look like simple conjunctivitis (red, watery, and irritated eyes). However, it can rapidly progress to severe inflammation and blistering of the ocular surface.   During this acute phase, the same immune response causing the skin to detach is attacking one of the cell layers, called the epithelial layer, of the eyes. The greatest danger is the destruction of the limbal stem cells, which reside at the border of the cornea and the white of the eye (the conjunctiva). These cells are responsible for regenerating the clear surface of the eye; if they are destroyed, the eye loses its ability to heal properly.   The Game-Changing Treatment: Amniotic Membrane Transplantation Because the damage happens so quickly, early intervention is critical. One of the most effective treatments for severe ocular involvement in the acute phase is amniotic membrane transplantation.   Ophthalmologists use cryopreserved amniotic membrane, which is tissue derived from the inner layer of a placenta, to cover the surface of the eyes and the inside of the eyelids. This membrane has powerful anti-inflammatory and anti-scarring properties. When applied within the first week or so of the reaction, it acts as a biological bandage, suppressing the inflammatory cascade and protecting the delicate tissues and stem cells from permanent scarring.   The Chronic Phase: A Lifelong Battle For many survivors, the battle with SJS/TEN does not end when they leave the hospital or when their skin heals. Ocular complications can be chronic and require lifelong management.   Because the mucosal glands that produce tears are often damaged or destroyed, severe dry eye is common complication. In more severe cases, survivors may experience photophobia (extreme light sensitivity) or a condition called symblepharon, where the scarred inner eyelid fuses to the eyeball. Without ongoing specialized care, the ocular surface can become keratinized, which means it turns into hard, skin-like tissue to protect itself, and this can scratch the cornea and eventually lead to vision loss. The Importance of Multidisciplinary Care The complexity of ocular SJS/TEN highlights exactly why a multidisciplinary medical team is so crucial when managing this. An ophthalmologist, or eye [BC1]  specialist, needs to be evaluating the patient on day one, not after the acute phase has passed. Amniotic membrane transplantation within the first week can potentially prevent severe, chronic complications. Following discharge, patients often require the long-term expertise of cornea specialists and specialized optometrists to fit them for scleral lenses, which help manage severe dry eye and protect vision.     References 1.      Kohanim S, Palioura S, Saeed HN, Akpek EK, Amescua G, Basu S, Blomquist PH, Bouchard CS, Dart JK, Gai X, Gomes JA. Stevens-Johnson syndrome/toxic epidermal necrolysis–a comprehensive review and guide to therapy. I. Systemic disease. The ocular surface. 2016 Jan 1;14(1):2-19. 2.      Shanbhag SS, Chodosh J, Fathy C, Goverman J, Mitchell C, Saeed HN. Multidisciplinary care in Stevens-Johnson syndrome. Therapeutic Advances in Chronic Disease. 2020 Apr;11:2040622319894469. 3.      Saeed HN, Chodosh J. Ocular manifestations of Stevens–Johnson syndrome and their management. Current opinion in ophthalmology. 2016 Nov 1;27(6):522-9. 4.      Gregory DG. The ophthalmologic management of acute Stevens-Johnson syndrome. The ocular surface. 2008 Apr 1;6(2):87-95. 5.      Chang WC, Abe R, Anderson P, Anderson W, Ardern-Jones MR, Beachkofsky TM, Bellón T, Biala AK, Bouchard C, Cavalleri GL, Chapman N. SJS/TEN 2019: from science to translation. Journal of dermatological science. 2020 Apr 1;98(1):2-12.

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!

In Memoriam

SJS Educational Do you know what's SJS? SJS and TEN represent different degrees of severe, acute, life-threatening mucocutaneous reactions. It causes the skin to become red and purple, tender, and peel away from the body. Know more SJS Awareness Month Read more... SJS Information Poster Download Poster Sunnybrook Magazine Sonia’s Story Read story Survivor's Stories Find a Doctor Read more... SJS Facts Sheet Download Sheet SJS Brochure Read story A case of TEN (with Dr. Neil Shear- Sunnybrook hospital): Read story Supportive Story Sharing: Understand the Effect of SJS/TEN on Cognition, Emotion, and Behavior: What We Have Learned from Qualitative Interviews. Great Debates in Medical Dermatology. SJS/TEN: Acute reaction, or chronic disease? Concerts: 2020 2022 2024 Town Hall Meetings Skin of Colour Eye & Skin: How SJS/TEN Affects the Eyes & Skin of Color On February 29, 2024, a virtual town hall titled "Eye & Skin: How SJS/TEN Affects the Eyes & Skin of Color" raised awareness about Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN). Moderated by Coleen Lambert, it featured opening remarks from Sonia Whyte-Croasdaile, a moment of silence for victims, and insights from speakers like Francene Francis and patient representatives Karen Worthey and Jeremy Falk. Experts Dr. Rannakoe Lehloenya, Dr. Martin Huer, and Dr. Gloria B. Chiu discussed skin and ocular issues related to SJS/TEN, concluding with a Q&A session and closing remarks from Vincent Cornish on the importance of community support. Eye of the Storm Head to Toe On August 29, 2024, the virtual town hall "SJS/TEN Head to Toe" was co-moderated by Coleen Lambert and Sabrina Hundal. It opened with a welcome message, land acknowledgment, and remarks from Sonia Whyte-Croasdaile. Attendees observed a moment of silence for those affected by Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) and learned about the SJSC Move-A-Thon Fundraiser. Patient representatives Katie Farah and Kamna Narin shared personal stories, while experts Dr. Michelle Ramien, Dr. Esther Fuchs, Dr. Darren G. Gregory, and Dr. Elizabeth J. Phillips offered insights on SJS/TEN. The event concluded with a roundtable discussion, a prize draw by Frank Linhart, and closing remarks thanking participants for their contributions to awareness efforts. SJS/TEN & DRESS An in-depth webinar on Stevens-Johnson Syndrome (SJS), Toxic Epidermal Necrolysis (TEN), and Drug Reaction with Eosinophilia and Systemic Symptoms (DRESS). This session brings together medical experts and patient representatives and advocates to explore the clinical presentation, diagnosis, treatment, and long-term impacts of these rare but serious adverse drug reactions. SJS/TEN Research Study