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- Shining a Light on SJS/TEN: Recognizing Rare Disease Month
Every February, Rare Disease Month brings attention to conditions that affect only a small percentage of the population. Although these diseases are rare, they still have a devastating impact on the lives of those affected. One such condition is Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN)—two rare but severe skin reactions that require urgent medical care. While SJS/TEN is life-threatening, it remains largely unknown to the public and even under-recognized in the medical community. This lack of awareness contributes to delayed diagnoses, mismanagement, and a struggle for adequate research funding. This Rare Disease Month, we’re shedding light on the importance of recognizing and supporting those affected by SJS/TEN. How Rare is SJS/TEN? SJS/TEN is one of the rarest life-threatening medical emergencies, affecting an estimated 1 to 2 people per million per year. Despite its rarity, the condition has a high mortality rate, with up to 35% of TEN cases being fatal, and patients often face lifelong complications. Unlike many rare diseases that are present from birth, SJS/TEN can happen to anyone at any time. It is most often triggered by medications, including antibiotics, anticonvulsants, and allopurinol. Because SJS/TEN does not have a single genetic or hereditary cause, it is impossible to predict who will develop it, making prevention challenging. Another alarming aspect of SJS/TEN’s rarity is the limited experience many doctors have in diagnosing it. Since the condition is so uncommon, many cases are initially misdiagnosed as common viral infections, allergies, or other skin conditions, leading to delays in stopping the triggering medication, which is a key factor in survival. The Hidden Challenges of Rare Diseases Being diagnosed with any rare disease can feel isolating, and SJS/TEN is no exception. The rarity of the condition creates several challenges for patients and healthcare providers, including: 1. Delayed Diagnosis and Treatment Since most doctors do not encounter cases of SJS/TEN often, early symptoms like fever, sore throat, and eye irritation are often mistaken for another condition. By the time the skin symptoms appear, the condition has already progressed, making early intervention difficult. 2. Limited Research and Awareness Compared to other diseases, SJS/TEN research receives little funding. Since the disease is rare, clinical trials are limited, making it harder to find effective treatments. More research is needed to: ● Identify better treatment options beyond supportive care. ● Develop early warning tests for those at risk. ● Improve long-term rehabilitation and mental health support for survivors. 3. Lifelong Health Complications For those who survive SJS/TEN, the journey does not end with recovery. Many patients experience permanent complications, including: ● Chronic eye problems, including severe dry eye, scarring, and even blindness. ● Skin sensitivity and scarring, sometimes leading to disfigurement. ● Psychological distress, including PTSD and anxiety, due to the traumatic experience. These long-term effects make post-recovery support essential, yet few resources exist to help survivors reintegrate into their daily lives. Looking Ahead: Hope for the Future While SJS/TEN remains rare, there is hope for better prevention, treatment, and awareness. Advances in pharmacogenetics have already identified genetic markers—such as HLA-B*1502—that can help predict a person’s risk of developing SJS/TEN when taking certain medications. Additionally, increased research into drug safety and adverse reactions has the potential to reduce the number of new cases. By implementing stronger screening measures and improving early recognition, fewer people may develop SJS/TEN in the future. However, more work still needs to be done. Advocacy efforts by patients, healthcare providers, and researchers are essential to ensuring that SJS/TEN is properly recognized, diagnosed early, and treated with urgency. Why Rare Disease Awareness Matters SJS/TEN may be rare, but for those affected, it changes everything. This Rare Disease Month, we encourage people to take a moment to learn about SJS/TEN, support rare disease research, and help amplify the voices of those living with conditions that often go unnoticed. The more we educate, advocate, and support those with rare diseases, the closer we come to a world where no one faces these conditions alone. REFERENCES Marks, M. E., Botta, R. K., Abe, R., Beachkofsky, T. M., Boothman, I., Carleton, B. C., ... & Phillips, E. J. (2023). Updates in SJS/TEN: collaboration, innovation, and community. Frontiers in Medicine, 10 , 1213889. Harr, T., & French, L. E. (2010). Toxic epidermal necrolysis and Stevens-Johnson syndrome. Orphanet Journal of Rare Diseases, 5 (1), 39. Desai, S., Yasmeen, N., Amgoth, N., Rama Rao, A., Vidhya, B., & Ragaswetha, J. (2022). A glance on medication triggered rare disease—Stevens Johnson syndrome as global challenge in healthcare system. Impending Inquisitions in Humanities and Sciences (ICIIHS-2022) , 484-486. Cavero-Carbonell, C., Gimeno-Martos, S., Gras-Colomer, E., Páramo-Rodríguez, L., Alfaro, A., & Zurriaga, O. (2016). Stevens-Johnson Syndrome: identification of the risk factors in a rare disease. European Journal of Public Health, 26 (Suppl 1), 376. Rzany, B., Mockenhaupt, M., Baur, S., Schröder, W., Stocker, U., Müller, J., & Schöpf, E. (1996). Epidemiology of Erythema Exsudativum Multiforme Majus, Stevens-Johnson Syndrome, and Toxic Epidermal Necrolysis in Germany (1990-1992): Structure and Results of a Population-Based Registry. Journal of Clinical Epidemiology, 49 (7), 769-773. Lee, H. Y., Walsh, S. A., & Creamer, D. (2017). Long-term complications of Stevens-Johnson syndrome/toxic epidermal necrolysis (SJS/TEN): the spectrum of chronic problems in patients who survive an episode of SJS/TEN necessitates multidisciplinary follow-up. British Journal of Dermatology, 177 (4), 924-935.
- Understanding Stevens-Johnson Syndrome: Causes, Symptoms, and Risks
What Exactly is Stevens-Johnson Syndrome? Stevens-Johnson Syndrome (SJS) is a rare but serious disorder affecting the skin and mucous membranes, often triggered by a reaction to medication or infection. This condition causes the skin to blister and peel, forming painful lesions. If left untreated, SJS can lead to life-threatening complications, including infection and organ damage. You might wonder how SJS differs from other skin conditions. SJS is characterized by its sudden onset, typically beginning with flu-like symptoms before the skin reaction occurs. Often-affected sites include the mucous membrane surfaces of the mouth, eyes, and genitals, making it a medical emergency requiring immediate care. Who is Affected by Stevens-Johnson Syndrome? SJS is rare, affecting about 1 to 2 people per million each year. It can occur in individuals of all ages, but some people are at higher risk than others. Certain medications, such as antibiotics, anticonvulsants, and allopurinol are common triggers. People with HIV, a weakened immune system, or a genetic predisposition are also at higher risk. Recognizing the Signs and Symptoms of Stevens-Johnson Syndrome The early signs of SJS can easily be mistaken for common illnesses. Flu-like symptoms such as fever, cough, and sore throat often appear first. However, within days, a painful red or purplish rash develops, spreading across the body. This rash quickly turns into blisters, causing the skin to peel and leave raw areas exposed, which can lead to infection. Other symptoms include: ● Red, sore eyes that may be sensitive to light ● Swelling and crusting around the lips or mouth ● Difficulty swallowing due to sores in the mouth and throat If you or a loved one experiences these symptoms, especially after starting a new medication, seek medical attention immediately. What Causes Stevens-Johnson Syndrome? SJS is often triggered by medications, with antibiotics, anticonvulsants, and pain relievers being the most common culprits. Infections like pneumonia or herpes can also cause SJS in some cases. Although rare, SJS may occur in individuals with genetic markers that make them more susceptible to adverse reactions. The body’s immune system plays a role in SJS by mistakenly attacking healthy skin cells, leading to the characteristic rash and blisters. How is Stevens-Johnson Syndrome Diagnosed? Diagnosing SJS can be challenging because its early symptoms mimic other conditions. A specialist, such as a dermatologist, will examine the skin and mucous membranes and may perform a skin biopsy to confirm the diagnosis. It's crucial to seek care from medical professionals experienced in managing SJS, as it requires urgent treatment. Does Stevens-Johnson Syndrome Mean I’ll Always Have Skin Reactions? Once someone has had SJS, they are at higher risk of developing it again if exposed to the same medication or trigger. For this reason, it's essential to avoid the suspected trigger and wear medical alert bracelets to inform healthcare providers of the condition. Living with SJS can be difficult, but recognizing the condition early and avoiding known triggers are key steps in managing it. Reviewed by: Dr. Bruce Carleton References Schwartz, R. A., & McDonough, P. H. (2013). Stevens-Johnson syndrome: A review of the literature. Journal of the American Academy of Dermatology , 69(1), 32-42. Mockenhaupt, M. (2011). Stevens-Johnson syndrome and toxic epidermal necrolysis: Clinical patterns, diagnostic considerations, etiology, and therapeutic management. Seminars in Cutaneous Medicine and Surgery , 30(4), 255-261. Harr, T., & French, L. E. (2010). Toxic epidermal necrolysis and Stevens-Johnson syndrome. Orphanet Journal of Rare Diseases , 5(1), 39. High, W. A., Roujeau, J. C., & Stern, R. S. (2008). Stevens-Johnson syndrome and toxic epidermal necrolysis: Pathogenesis, clinical manifestations, and management. Dermatologic Clinics , 26(4), 579-593.
- SJS Awareness Month Challenges | This is how you can join the fight.
During August, we have some challenges you can join to support us in our fight. Check it out. August 3rd Sunglasses Day Challenge: Support SJS survivors affected by photophobia by wearing dark glasses indoors, outdoors, and at night. Light sensitivity/photophobia is one of the long-term effects of SJS/TEN, as a result some survivors experience severe difficulty dealing with bright light both indoor and outdoor. Some describe this experience as temporary blindness. The next time you see an SJS/TEN survivor wearing dark glasses inside or during the night, think: this is not a fashion statement; it’s a survival statement. August 9th Visual Accessibility Day Challenge: Explore the visual accessibility function on your smartphone and try using these features! Also, be mindful of the e-mails you send today; think about the font size, colours, and spacing. How would these affect individuals with visual impairment? Visual impairment is a decreased ability to see that cannot be fixed with corrective devices such as glasses or contacts. Many SJS/TEN survivors have long-term complications to their eyes even after leaving the hospital. These complications often make it difficult for SJS/TEN survivors to read particular writing or see specific images. Did you know that nearly all smartphones have accessibility features to help overcome sensory impairment? August 17th Virtual Town Hall Challenge: Join us at our Virtual SJS Town Hall Please join us at the SJS Town Hall where we will be sharing updates, connecting with keynote speakers and listening to the harrowing stories of SJS / TEN survivors. This town hall event offers public awareness, education, research updates as well as addressing some common issues and concerns on the subject. SJS/TEN patient representatives lovingly share their stories in an effort to help bring and spread awareness of the illness. August 17th-19th Virtual Move-A-Thon Challenge: Join SJS Canada from ANYWHERE as part of our Virtual “Move-a-Thon.” We are moving our bodies in support of Stevens-Johnson Syndrome Canada (SJSC) from August 17-19. August 18th SJS Awareness Day Challenge: Complete all checks for the day! Don't forget to Social media blast with informational facts about the illness Follow us on social media to hear survivors share their stories with us Encourage others to wear blue, SJS official color Be encouragement to tell someone about SJS/TEN throughout the day Join our virtual/in person SJS/TEN awareness Move-A-Thon Survivors can get together, within a virtual space, with a facilitator and share their experience and support each other. Please feel free to spread the word or distribute SJS awareness materials within the community August 23rd Hat Day Challenge: Support SJS/TEN survivors by wearing a broad rim hat! Check your closet – how many clothes can you identify with UPF? Wear your UPF clothing if you have any! And remember to wear sunscreen of at least SPF 30, reapplying every 80 minutes! Many survivors have to wear broad rim hats and other head covering to protect themselves from the sun as their skin has become very sensitive. Along with the dark glasses, the hat shades the eyes and help allow them to cope with the effect of the sun on their eyes. Some survivors also wear UPF (ultraviolet protection factor) clothing to protect their body from the sun’s UV rays. August 29th Eye Care Day Challenge: Remember to give your eyes a rest during your workday by using the 20-20-20 rule! Every 20 minutes, shift your eyes to look at an objective 20 feet away, for 20 seconds! (Have dry eyes? Use artificial lubricant or try a warm compress! Wet a clean washcloth with warm water and wring it out until somewhat dry. Place the washcloth over your closed eyes for at least 1 minute) The pain of SJS/TEN is so excruciating, sometimes just opening the eyes causes severe pain. As well some survivor’s eyes lids were sealed shut for days because numerous sores covered their eyes. When the eye lids were finally open again, some survivors sustain severe vision loss, and for some their eyelids never opens resulting in blindness. We kindly ask you to post your photo or video as you engage in these activities with #sjscantstopme
Other Pages (30)
- SJS Awareness Month | SJS Canada
SJS Awareness Month SJS Awareness Month Activities | This is how you can join the fight. We have some activities during August that you can join to support us in our fight. Check them out. What is the study about? Survivors of Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) face numerous psychological and physiological challenges that significantly affect their quality of life. Many experience difficulties in returning to work and maintaining relationships. A substantial number, approximately 50%, remain hesitant to take medications even five years after their discharge. Feedback from patients, family caregivers, and clinicians indicates that current general quality of life (QoL) measures do not adequately reflect the unique experiences of SJS/TEN survivors. To address this gap, our project aims to develop and test a specific QoL outcome measure tailored for individuals affected by SJS/TEN, which we have named QoLTEN. We have created a draft version of this measure and would like to invite you to participate in a two-round survey designed to evaluate how effectively QoLTEN captures your quality-of-life experiences. Your input will be invaluable in refining this tool to better serve the needs of SJS/TEN survivors. Who is on the research team? This study is led by Professor Pauline O’Reilly from the Department of Nursing & Midwifery at the University of Limerick. The research team also includes Professors Sarah Walsh, Saskia Ingen Housz-Oro, Chris Bunker, Roni Dodiuk-Gad, Donal Fortune, Ailish Hannigan, and Ms. Sheila Ryan. Together, they are dedicated to advancing our understanding of quality of life for survivors of SJS/TEN. Who can participate? We are inviting adults who had SJS/TEN to take part in the two round online survey. What does it involve? Participants will be invited to take part in a two-round survey, with each round taking approximately 20 minutes to complete. The survey will be conducted online using GDPR-compliant software (Qualtrics). If you consent to participate, you will receive a link to the first survey, which will include the QoLTEN measure along with some additional questionnaires, including a brief demographic survey and two other quality of life assessments. Two weeks later, you will receive another link to repeat the process, allowing us to incorporate any feedback you provided into QoLTEN. The insights gathered from this study will be instrumental in finalizing the development of the QoLTEN measure. If you choose to participate, your name will be entered into a draw for a voucher or gift as a token of appreciation. What are the benefits? We hope that QoLTEN will provide significant benefits to patients diagnosed with SJS or TEN in the future. This initiative represents a practical step towards addressing the unique needs of SJS/TEN patients and has the potential to enhance care by aiding clinicians in assessing their condition and developing appropriate treatment plans. Furthermore, QoLTEN aims to facilitate communication between clinicians and patients, enabling more meaningful discussions about how the condition impacts their lives. What are the risks? There are no known risks associated with this research project. Participation in this study is entirely voluntary. If at any point you decide that you no longer wish to participate, you are free to withdraw without any consequences. Your decision to stop participating will be respected, and there will be no negative repercussions for changing your mind. How will data be protected? The Data Controllers for this study are the University of Limerick, Plassey, Limerick. All information collected from the survey will be kept confidential, with password protection applied to each file on the university’s computer systems. The Principal Investigator will securely store all data, including consent forms. Participants will not have their names attached to any published information; instead, they will be assigned a study ID code. Once the study is completed, all data will be retained for seven years in accordance with the Data Protection Act (2018) and will then be securely erased from electronic sources, including audio files, with any hard copies being shredded. The University of Limerick will not disclose your personal data to any third parties. For more information on Data Protection at the University, please visit www.ul.ie/dataprotection. You can also reach out to the Data Protection Officer at dataprotection@ul.ie or by writing to the Data Protection Officer, Room A1-073, University of Limerick, Limerick. How are the results shared? The data collected from the surveys will be analyzed and compiled by Professor Pauline O’Reilly and the research team. The primary aim of the surveys is to assess how effectively QoLTEN measures your quality-of-life experiences. The findings from this research will be submitted for publication in a peer-reviewed journal. Rest assured, the names of research participants and any identifying details will not be included in any publications.
- Contact | SJS Canada
Contact Get in Touch Email BN info@sjscanada.org | 81927 7393 RR0001 Name Email Subject Your message Send Thanks for submitting! We Need Your Support Today! Donate
- Affiliates | SJS Canada
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