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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

Every October, Canadian Patient Safety Week reminds us of the importance of preventing harm before it happens. For rare but serious conditions like Stevens–Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN), prevention means reducing risk for everyone: by improving drug safety, recognizing early signs, and responding quickly when reactions occur. While we cannot always predict who will develop them, greater awareness can help reduce the risk.   Understanding the Risk SJS and TEN are very serious reactions to certain medications. They mostly cause blistering and peeling of the skin and the lining inside our mouths or eyes. Drugs like antibiotics and medicines for seizures are commonly associated with causing SJS/TEN. Although lots of people use these drugs safely, only a few will develop SJS/TEN. Because it's so rare, finding out who is at risk can be tough, so systems that watch for medication problems ("pharmacovigilance") are very important.   How We Learn Which Drugs Are Risky For over 50 years, doctors have reported drug reactions to large databases like the FDA Adverse Event Reporting System (MedWatch). This helps us learn which medicines carry the most risk for SJS/TEN. Collecting this information guides safer prescribing choices for doctors, pharmacists, and nurses and helps patients everywhere.   Why Risks Vary: Genetic traits and Medication Choices The risk of SJS/TEN isn’t the same for everyone. Genetic traits, such as certain HLA genes, make some people more likely to develop SJS/TEN after taking particular medications. This makes it important for healthcare providers to consider genetics whenever possible when prescribing medicines and ensure such testing is done before using medications known to cause SJS/TEN.   Recent studies have found that some antibiotics are among the most frequent causes of SJS/TEN. That's why doctors and pharmacists must use antibiotics carefully and look out for early symptoms of SJS/TEN. Learning these patterns helps improve drug safety for everyone.   Pharmacists: The Medication Experts Pharmacists play a key role in keeping patients safe from severe drug reactions. They can help figure out which drug might have caused the problem and work with your doctor to choose a safer alternative. If SJS/TEN or any drug reaction is suspected, pharmacists can review your medicines to avoid further harm and recommend options that are less likely to trigger another reaction.   Working Together for Better Prevention Preventing serious drug reactions takes teamwork: doctors, pharmacists, patients, and regulators support each other. New programs focus on catching early warning signs and acting quickly. The biggest way to prevent problems is through education, clear communication, and making sure everyone knows the risk factors.   Spotting Early Symptoms Saves Lives Early symptoms like fever, sore throat, red or irritated eyes, show up days before any blistering or peeling starts. If these appear, stopping the medication and seeking medical help immediately is crucial. Educating patients, wearing MedicAlert bracelets for drug allergies and specifically for SJS/TEN being the reaction, can help ensure you won't be given the same medication again.   When Reactions Happen: Multidisciplinary Care Sometimes, severe reactions can’t be avoided. Getting care from a team of specialists, such as skin doctors (dermatologists), eye doctors, burn care, and mental health professionals, leads to the best results. Reporting drug reactions to regulators like FDA or Health Canada afterwards helps improve medicine safety for future patients.   Conclusion Preventing SJS/TEN starts with awareness among healthcare professionals, patients, and caregivers alike. Recognizing early symptoms, reporting suspected drug reactions, and improving communication between providers and patients can make all the difference. By continuing to strengthen pharmacovigilance and collaboration across healthcare systems, we can move closer to a world where severe drug reactions are identified faster and managed more safely.   This October, during Canadian Patient Safety Week, let us remember that awareness saves lives and that prevention starts with all of us.   References Castellana E, Budau PM, Chiappetta MR. Pharmacovigilance and Stevens-Johnson Syndrome (SJS)/Toxic Epidermal Necrolysis (TEN): 55 Years of Retrospective Analysis of the FDA Adverse Event Reporting System (FAERS) Database. Hospital Pharmacy. 2025 Apr 30:00185787251337610. Phillips EJ. Defining Regional Differences in Drug-Induced SJS/TEN: A Tool to Improve Drug Safety? Clin Pharmacol Ther. 2017;102(4):589-591. https://doi.org/10.1002/cpt.1175 Yan X, Ma J, Guo C, Yang G. Association of antibiotics with Stevens-Johnson syndrome and toxic epidermal necrolysis: a real-world pharmacovigilance study. International Journal of Antimicrobial Agents. 2025 Apr 25:107524. Marks ME, Botta RK, Abe R, Beachkofsky TM, Boothman I, Carleton BC, Chung WH, Cibotti RR, Dodiuk-Gad RP, Grimstein C, Hasegawa A. Updates in SJS/TEN: collaboration, innovation, and community. Frontiers in Medicine. 2023 Oct 11;10:1213889. Shanbhag SS, Chodosh J, Fathy C, et al. Multidisciplinary Care in Stevens-Johnson Syndrome. Ther Adv Chronic Dis. 2020;11:2040622319894469. U.S. Food and Drug Administration. MedWatch: The FDA Safety Information and Adverse Event Reporting Program [Internet]. Silver Spring (MD): FDA; [cited 2025 Oct 9]. Available from: https://www.fda.gov/safety/medwatch-fda-safety-information-and-adverse-event-reporting-program

Stevens–Johnson yndrome (SJS) and toxic epidermal necrolysis (TEN) are rare, life-threatening skin reactions that can affect anyone. However, patients with darker skin tones may face unique risks, challenges, and outcomes that are often overlooked in both research and medical education.   Diagnostic Challenges in Skin of Color SJS/TEN often begins with a painful rash, blisters, and mucosal involvement. In lighter skin, these changes appear as red or dusky erythema, making them easier to identify. In contrast, on darker skin, rashes may look purple, gray, or violaceous, which can delay recognition and lead to misdiagnosis. A case report of a young Black woman illustrated how her early symptoms were mistaken for allergic reactions and conjunctivitis before SJS was correctly diagnosed¹.   Severity of Ocular Complications Patients with darker phototypes (or darker skin colours) (Fitzpatrick Scale skin types V and VI) may also be at greater risk of severe long-term eye damage after SJS/TEN. In one study, nearly 78% of patients with darker phototypes experienced profound visual impairment compared to 50% of those with lighter skin². These patients were also more likely to develop swelling and scarring of the conjunctiva, the layer of tissue that lines the inner surface of the eyelids, and corneal ulceration, leading to vision loss. Researchers suggest that this may be linked to profibrotic wound-healing processes more common in darker skin².   Genetic and Immunologic Risk Factors Genetic factors also play a role in SJS/TEN outcomes. Certain variants in patients’ genetics, such as HLA-B* 31:01, occur more frequently in some people of Asian or African ancestry and increase susceptibility to SJS/TEN and other severe skin reactions that are caused by some  medications³. In addition, systemic conditions like HIV, which disproportionately impact communities of color raise the risk of SJS/TEN.   Underrepresentation in Medical Education One of the most important challenges is the lack of representation of patients with darker phototypes (or darker skin colours) in medical education. A review of widely used textbooks and online resources found that fewer than 20% of SJS images depict patients with darker skin¹. This underrepresentation means many healthcare providers are not adequately trained to recognize how SJS presents in patients of color. As a result, diagnosis may be delayed, contributing to poorer outcomes.   Moving Forward To improve care for patients with skin of color who develop SJS/TEN, we need to: ●      Expand medical training resources to include more images of skin conditions in darker tones. ●      Recognize that ocular complications may be more severe in these patients and require close follow-up. ●      Ensure equitable access to specialist care.   Bibliography Diep D, Aluri B, Crane A, et al. Stevens-Johnson Syndrome in a Patient of Color: A Case Report and an Assessment of Diversity in Medical Education Resources.  Cureus. 2022;14(2):e22245. doi:10.7759/cureus.22245 Thore D, Delcampe A, Ingen-Housz-Oro S, et al. Dark skin phototype is associated with more severe ocular complications of Stevens–Johnson syndrome and toxic epidermal necrolysis.  Br J Dermatol. 2019;181(1):212–213. doi:10.1111/bjd.17627 Cheng L. Current Pharmacogenetic Perspective on Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis. Front Pharmacol. 2021 Apr 26;12:588063. doi: 10.3389/fphar.2021.588063. PMID: 33981213; PMCID: PMC8107822.

Events Calendar December 2025 Today Mon Tue Wed Thu Fri Sat Sun 1 2 6:00 PM Elpizo Counseling +1 more 3 4 5 6 7 6:00 PM December Benefits Concert +1 more +2 more 8 9 6:00 PM Elpizo Counseling +1 more 10 11 12 13 14 15 16 17 3:30 PM SJSC Support Group +1 more 18 19 20 21 22 23 24 25 26 27 28 29 30 31 1 2 3 4 5 6 7 8 9 10 11

Testimonials I am now 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. ✌️🌸 Jane G. I experienced Stevens-Johnson Syndrome (SJS) in March 2005. I discovered Sonia’s ‘SJS Canada Support Group’ in 2020. SJS is scary, and the long-term symptoms af fect victims diff erently. For me, it’s mostly been an ongoing difficulty with my eyes. Many victims experience SJS much more intensely. SJS Can is a place for survivors and/or guardians to be heard, ask questions, share experiences, and feel safe. It reminds us we’re not alone in this fight and that brighter days are ahead. I greatly appreciate the availability and consistency of Sonia’s group. I respect and am grateful for the work Sonia puts into moving the group and thus SJS awareness forward. Sonia is an example of professionalism and commitment and I really appreciate the community and fellowship her group offers. Jeremy F. My name is YC and I experienced Steven's Johnson's Syndrome (SJS) in November 2019. I discovered Sonia’s ‘SJS Canada Support group in 2021. When I was first diagnosed with SJS, I thought it was something short term and that I would be able to fully recover and resume my life as normally as before. I soon realized that I may be dealing with long term/permanent issues. SJS Canada support group has helped me cope with my diagnosis and have provided valuable information pertaining to treatment and advice. It has been wonderful getting to know the members of the group and hearing their stories. Sonia’s efforts in organizing the meetings and finding guest speakers are greatly appreciated. YC In 2014 at the age of 52 I was hospitalized due to an allergic reaction to a medication which caused my immune system to go out of control and ultimately diagnosed as Stevens Johnson Syndrome. It was so bad that I was not expected to survive but with excellent medical intervention and a brilliant ophthalmologist and surgeries, 7 years later I still have my vision although the trauma of SJS will always be there. I'm grateful for all the support I have received from the SJS TENS Grp of Canada and the information they continually provide. It's a very rare disease and can be life threatening but I am proof that it can be beaten. Paul RG I have learned so much about the SJSCA Support group. I was very hurt learning about the ordeal the founder, my friend and former classmates Sonia Crossdale went through. Mrs Crossdale a strong woman of God be bless and continue the fight in Jesus's name. Marlene A. Hi Sonia, one thing I have learned through this journey is that Angels are all around us. You may not see them but they show themselves when needed. Thank you for all you have done. Dennis P.

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