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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.

Stevens–Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) are rare, life-threatening reactions, most often triggered by medications. Despite their severity, early SJS/TEN is frequently misdiagnosed, delaying withdrawal of the offending drug and appropriate care. For a condition where hours and days matter, misrecognition can significantly worsen outcomes. As we recognize Rare Disease Month, it is important to examine why SJS/TEN is so often missed, what it is commonly mistaken for, and how diagnostic challenges may intersect with broader health inequities.   Why SJS/TEN Is Commonly Misdiagnosed SJS/TEN is rare, and many clinicians will encounter few cases during their careers. As a result, early presentations are often interpreted as more common and less severe conditions. A major review on severe cutaneous drug reactions notes that approximately one-third of patients referred to specialist centers with suspected SJS/TEN ultimately receive a different diagnosis, highlighting the diagnostic uncertainty surrounding this disease¹. This uncertainty is partly driven by the nonspecific nature of early symptoms, which often include fever, malaise, sore throat, and eye discomfort. At this stage, SJS/TEN may resemble viral illness, allergic drug eruptions, or other more common rashes.   Common Conditions Mistaken for SJS/TEN The differential diagnosis of SJS/TEN is broad. According to Bachot and Roujeau, the most frequent misdiagnoses include erythema multiforme major, acute generalized exanthematous pustulosis, staphylococcal scalded skin syndrome, autoimmune blistering diseases, and exfoliative dermatitis¹. This diagnostic overlap is clinically important. Prompt recognition and immediate discontinuation of the causative medication remains the most critical intervention in reducing morbidity and mortality. Delays caused by misdiagnosis allow disease progression and increase the risk of complications.   When SJS Presents Before Skin Detachment Misdiagnosis is especially likely when SJS/TEN presents before classic skin findings appear. A published case report describes a young woman who initially presented with fever, conjunctivitis, and superficial keratitis, and was treated for presumed infectious eye disease before developing mucosal erosions and skin involvement consistent with SJS². In this case, ocular symptoms preceded cutaneous findings, delaying diagnosis. This example illustrates an important point: SJS/TEN may begin with ocular or mucosal symptoms alone, and clinicians outside of dermatology may be the first to encounter the disease.   Rare Disease Status and System-Level Misclassification Misdiagnosis is not limited to bedside evaluation. Large electronic health record studies demonstrate that accurately identifying true SJS/TEN cases within health systems is challenging. An analysis of electronic health records covering nearly 60 million individuals found that only a small proportion of cases initially coded as SJS/TEN were confirmed after detailed chart review by dermatologists³. This finding reflects ongoing difficulties in distinguishing SJS/TEN from other severe skin reactions, even at the population level. For patients, misclassification can lead to delayed referrals, inconsistent documentation, and barriers to long-term follow-up care.   Racial Disparities and Risk Considerations While SJS/TEN affects individuals of all backgrounds, risk is not evenly distributed across populations. A large U.S. hospitalization study examining drug-associated SJS/TEN found that Asian and Black patients were disproportionately represented among hospitalized cases, compared with White patients⁴. These disparities were strongly associated with known genetic risk factors, including HLA variants linked to severe drug reactions. Although this study focuses on incidence rather than misdiagnosis, it raises an important concern: communities at higher risk for SJS/TEN may also be vulnerable to delayed recognition, particularly when combined with underrepresentation in medical education and structural barriers to specialist care.   Why Early Recognition Matters SJS/TEN carries a substantial risk of mortality, particularly in TEN, and survivors often experience long-term complications affecting the skin, eyes, and mucous membranes. Across studies, early diagnosis and rapid withdrawal of the offending drug remain the most important factors influencing outcomes¹. Even short delays can allow limited disease to progress to extensive epidermal necrolysis.   The Takeaway SJS/TEN is rare, but misdiagnosis is common. Early symptoms may resemble benign illnesses, and delayed recognition can have devastating consequences. As we reflect during Rare Disease Month, improving awareness, diagnostic accuracy, and equity in recognition is essential to improving outcomes for all individuals affected by SJS/TEN.   References Bachot N, Roujeau JC. Differential diagnosis of severe cutaneous drug eruptions. American Journal of Clinical Dermatology . 2003;4(8):561–572. Chan F, Benson MD, Plemel DJA, Mahmood MN, Chan SM. A diagnosis of Stevens–Johnson syndrome in a patient presenting with superficial keratitis. American Journal of Ophthalmology Case Reports . 2018;11:167–169. Davis RL, Gallagher MA, Asgari MM, et al. Identification of Stevens–Johnson syndrome and toxic epidermal necrolysis in electronic health record databases. Pharmacoepidemiology and Drug Safety . 2015;24(7):684–692. Lu N, Rai SK, Terkeltaub R, et al. Racial disparities in the risk of Stevens–Johnson syndrome and toxic epidermal necrolysis as urate-lowering drug adverse events in the United States. Seminars in Arthritis and Rheumatism . 2016;46(2):253–258.

Recovery from Stevens–Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) does not end when the skin stops blistering. For many survivors, the weeks and months after hospitalization are defined by rebuilding strength, healing wounds, and restoring physical function. Two pillars of this recovery, nutrition and physical rehabilitation, are often under-discussed, yet they are central to healing.   This post explores what research and clinical guidance tell us about how food, nutrients, and movement support recovery after SJS/TEN, and why these elements matter just as much as medications and wound care.   Why Nutrition Matters So Much After SJS/TEN SJS and TEN cause extensive skin and mucosal loss, triggering a hypermetabolic, catabolic state  similar to severe burns. The body rapidly loses protein, fluids, and electrolytes while simultaneously needing large amounts of energy and nutrients to rebuild damaged tissue. A multicenter review by Graves et al. (2016) emphasized that patients with TEN often experience: ·       Profound protein losses through open skin and wounds ·       Increased energy expenditure ·       High risk of malnutrition without early and aggressive nutrition support Inadequate nutrition during the acute and recovery phases has been associated with delayed wound healing, increased infection risk, and prolonged hospital stays.   Calories and Protein: The Foundation of Healing Multiple studies highlight high-calorie, high-protein intake  as essential in SJS/TEN recovery. ·       Coss-Bu et al. (1997)  demonstrated that patients with TEN have significantly elevated energy and nitrogen requirements, similar to patients with large-area burns. Without sufficient calories and protein, patients enter negative nitrogen balance, impairing skin regeneration and immune function. ·       Gingeri et al. (2019)  reinforced that early nutritional intervention, preferably enteral feeding when oral intake is limited, supports faster epithelialization and overall recovery. Protein is particularly critical. It supports: ·       New skin formation ·       Immune defense ·       Muscle mass preservation In practical terms, many patients require protein intake well above typical daily recommendations , often guided by a registered dietitian.   Micronutrients and Wound Healing Beyond calories and protein, specific vitamins and minerals play key roles in recovery. According to Eating Well for Wound Healing  from Alberta Health Services: ·       Vitamin C  supports collagen formation and immune function ·       Vitamin A  assists with skin repair and epithelialization ·       Zinc  is essential for cell growth and wound closure ·       Iron  supports oxygen delivery to healing tissues   Deficiencies in these nutrients can slow healing and worsen fatigue, which are both common challenges for SJS/TEN survivors. While supplementation may be helpful in some cases, guidance from a healthcare professional is important to avoid excess intake or interactions.   When Eating Is Hard Many people recovering from SJS/TEN struggle with: ·       Painful oral or esophageal involvement ·       Altered taste ·       Dry mouth ·       Gastrointestinal symptoms The multicenter review by Graves et al. (2016) notes that enteral nutrition (tube feeding)  should be initiated early when oral intake is insufficient. Even during later recovery, strategies such as: ·       Soft or blended foods ·       Small, frequent meals ·       High-calorie oral nutrition supplements can help meet nutritional needs without overwhelming the patient.   Physical Recovery: More Than Just Rest Prolonged hospitalization, bed rest, and systemic inflammation often lead to muscle wasting, joint stiffness, and functional decline  after SJS/TEN. A 2024 case report by Kumar highlighted the benefits of early mobilization and functional training  in a patient recovering from SJS. The report demonstrated that: ·       Gradual, supervised movement improved strength and endurance ·       Early physiotherapy reduced long-term disability ·       Functional training supported faster reintegration into daily activities Importantly, rehabilitation was tailored to the patient’s pain levels and skin healing status, emphasizing safety and pacing.   The Role of Physiotherapy and Gentle Movement Physical rehabilitation after SJS/TEN may include: ·       Range-of-motion exercises to prevent contractures ·       Progressive strengthening to rebuild muscle ·       Balance and endurance training ·       Functional tasks such as walking, stair climbing, and self-care activities Even short periods of movement, when medically safe, can help counteract deconditioning. For many survivors, working with a physiotherapist familiar with burn or dermatologic injury recovery can be transformative.   Recovery Is Not One-Size-Fits-All The nutritional and physical needs of someone recovering from SJS differ widely depending on: ·       Extent of skin involvement ·       Presence of mucosal or gastrointestinal injury ·       Age and pre-illness health ·       Ongoing complications or chronic sequelae What the literature consistently emphasizes is the importance of multidisciplinary care  that involves dietitians, physiotherapists, physicians, and nurses to support holistic recovery.   The Takeaway Healing after SJS/TEN requires far more than time. Adequate nutrition fuels skin repair, immune recovery, and strength. Thoughtful physical rehabilitation restores function, independence, and confidence. For survivors, caregivers, and clinicians alike, recognizing nutrition and movement as core components of recovery can make a meaningful difference in long-term outcomes. The fight doesn’t end when the rash fades. Recovery is an active process, and the body needs fuel and movement to truly heal.   References 1.       Graves C, Faraklas I, Maniatis K, Panter E, La Force J, Aleem R, Zavala S, Albrecht M, Edwards P, Cochran A. Nutrition in toxic epidermal necrolysis: a multicenter review. Nutrition in Clinical Practice. 2016 Dec;31(6):836-40. 2.       Alberta Health Services. Eating Well for Wound Healing [Internet]. Alberta Health Services; 2017. Available from: https://www.albertahealthservices.ca/assets/info/nutrition/if-nfs-eating-well-for-wound-healing.pdf 3.       Kumar N. Early mobilization and functional training for early recovery after Stevens–Johnson syndrome: a case report. J Res Sports Rehabil. 2025 Dec;12(4): 143-147. doi:10.30476/jrsr.2024.98221.1353 4.       Coss‐Bu JA, Jefferson LS, Levy ML, Walding D, David Y, Klish WJ. Nutrition requirements in patients with toxic epidermal necrolysis. Nutrition in clinical practice. 1997 Apr;12(2):81-4. 5.       Gingeri C, Devi A, Qurathulain, Raj E. Nutritional management in Stevens–Johnson syndrome. IP J Nutr Metab Health Sci. 2019;2(1):20–22. doi:10.18231/j.ijnmhs.2019.005

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Affiliates Our partnerships as affiliates with the Canadian Skin Patient Alliance (CSPA) and the International Alliance of Dermatology Patient Organizations (IADPO—also known as GlobalSkin) have afforded us the opportunity to collaborate and build relationships with multiple organizations that treat a variety of skin disorders. By doing so, we are able to expand the reach of the SJS/TEN patient community so they have access to added resources. Our skin, the largest organ in our body is the first introduction of oneself to the world. These organizations help to build SKIN confidence and define the skin you are in. Registered member with the National Organization for Rare Disease (NORD) since 2023. Canadian Skin has some valuable information in support of SJS click here for more. The Canadian Skin Patient Alliance (CSPA) is a national non-profit organization dedicated to advocating, educating and supporting Canadians living with skin diseases, conditions and traumas. They serve as an umbrella organization for Canadian patient groups and organizations that deal with specific skin disorders. By working together, they advocate for the needs of skin patients across the country and provide a broad range of education and support. Visit canadianskin.ca Founded on principles of patient-centered care and global collaboration, the World Patients Alliance (WPA) unites diverse patient organizations worldwide. With a steadfast commitment to empowering patients and improving healthcare outcomes, WPA facilitates dialogue among its extensive network of members spanning various health conditions and geographical locations. SJS Canada's inclusion as a Full Member underscores its dedication to enhancing patient support, education, and advocacy on an international scale. This milestone strengthens WPA’s mission to champion patient rights and amplify the collective voice of patients globally. The International Alliance of Dermatology Patient Organizations (IADPO – also known as GlobalSkin) is a unique global alliance, committed to improving the lives of skin patients worldwide. We nurture relationships with members, partners and all involved in healthcare ─ building dialogue with decision-makers around the globe to promote patient-centered healthcare. GlobalSkin works to empower its more than 167 patient organization members ─ located in 53 countries representing more than 60 disease areas ─ to reach more patients and provide them with greater support, education and advocacy. Visit globalskin.org Lupus Ontario is a dedicated provincial organization committed to improving the lives of those affected by lupus. We foster strong relationships with our members, partners, and everyone involved in healthcare, creating a dialogue with decision-makers across the region to promote patient-centered healthcare. Lupus Ontario strives to empower its extensive network of patient organization members, providing support, education, and advocacy to reach more patients and enhance their quality of life. With a focus on patient needs, we work tirelessly to offer greater resources and assistance to those living with lupus throughout Ontario. The National Organization for Rare Disorders (NORD) is a leading advocate for individuals and families affected by rare diseases, dedicated to improving their lives through advocacy, education, and support. NORD brings together a diverse network of patient organizations, healthcare partners, and stakeholders to foster dialogue and drive impactful change in rare disease care. Representing over 30 million Americans affected by rare diseases, NORD advocates for policies that advance research, accelerate treatment development, and ensure access to therapies. Visit rarediseases.org Streaming Praise Radio (sprlivefm.com) is Canada’s first gospel internet radio station, offering 24/7 Christian music and talk shows, including the popular Praise Life morning show. It supports diverse music genres and independent artists. The station is deeply involved in community initiatives and has embraced digital platforms with successful YouTube live-streaming shows. During the 2020 pandemic, it hosted its first annual organ donor awareness benefit virtual concert, highlighting its commitment to making a positive impact. Visit worldpatientsalliance.org Visit lupusontario.org Visit sprlivefm.com

SJS/TEN Canada Survivors' Handbook Download Handbook PDF