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.

August is SJS Awareness Month and Stevens Johnson Syndrome Canada has an exciting lineup of events and activities planned throughout the entire month to bring our community together in awareness, education, and solidarity. Please refer to our August Calendar of Events for the full schedule of what is coming your way this month. Most importantly, mark your calendars for the SJS Awareness Fundraising Game Night taking place on Tuesday, August 18, 2026 from 6:00 PM to 7:00 PM Eastern Time. This is a free one-hour virtual event featuring live interactive games and SJS/TEN educational content open to everyone. Do not miss it — sign up today using the registration link below and join us for an evening of community, awareness, and meaningful impact. Stay connected with us throughout August for daily awareness content, survivor stories, and campaign updates. Together we are hope. Together we are healing. Together we are one community. 💙 Registration Link: Webinar Link: Click Here Click Here Upcoming Events 2026 Virtual Town Hall / Webinar Thu, Aug 27 https://us02web.zoom.us/j/86973918683?pwd=Q More info RSVP Multiple Dates SJSC Support Group Wed, Oct 21 https://us02web.zoom.us/j/86973918683?pwd=Q More info RSVP Volunteer Appreciation Week – A Heartfelt Thank You During Volunteer Appreciation Week, we proudly recognize and celebrate the incredible individuals who give their time, compassion, and expertise to support the SJS/TEN community. Your dedication is the heartbeat of SJS Canada. Because of you, we are able to provide support, raise awareness, and continue advocating for those impacted by Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis. We are deeply grateful for all that you do. Your commitment truly makes a difference. Thank you for being part of our community . Events Calendar August 2026 Today Mon Tue Wed Thu Fri Sat Sun 27 28 29 30 31 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 3:30 PM SJSC Support Group 20 21 22 23 24 25 26 27 7:00 PM 2026 Virtual Town Hall / Webinar 28 29 30 31 1 2 3 4 5 6 We Need Your Support Today! Donate Past Events Multiple Dates Wed, Aug 19 SJSC Support Group / https://us02web.zoom.us/j/86973918683?pwd=Q Details Aug 19, 2026, 3:30 PM – 4:30 PM EDT https://us02web.zoom.us/j/86973918683?pwd=Q +2 more Mon, Apr 20 Annual General Meeting (AGM) 2026 / Zoom Meeting Details Apr 20, 2026, 7:15 PM – 9:15 PM EDT Zoom Meeting +21 more Thu, Feb 26 Rare Disease Month Webinar / Zoom Details Feb 26, 2026, 7:00 PM – 9:00 PM Zoom +34 more Multiple Dates Wed, Jan 21 SJSC Support Group / Virtual Zoom online Conference Details Jan 21, 2026, 3:30 PM – 4:30 PM EST Virtual Zoom online Conference See All Multiple Dates Tue, Dec 09 Elpizo Counseling / Zoom Meeting Details Dec 09, 2025, 6:00 PM – 7:30 PM Zoom Meeting See All Sun, Dec 07 December Benefits Concert / Virtual Zoom Event Details Dec 07, 2025, 6:00 PM – 9:00 PM EST Virtual Zoom Event Join us for an unforgettable night of performances, fun and entertainment at our year end Benefits Concert. +17 more Sun, Dec 07 Save the Date Christmas Concert / Zoom Details Dec 07, 2025, 6:00 PM – 9:30 PM Zoom 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 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 Load 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 2026 Virtual Town Hall / Webinar Thu, Aug 27 https://us02web.zoom.us/j/86973918683?pwd=Q More info Save spot Multiple Dates SJSC Support Group Wed, Oct 21 https://us02web.zoom.us/j/86973918683?pwd=Q 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

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