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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.

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.

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

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 SJS Canada February Webinar Tue, Feb 25 Zoom More info Save spot Multiple Dates Elpizo Counseling Wed, Mar 05 Zoom More info Save spot Multiple Dates SJSC Support Group Wed, Mar 19 Virtual Zoom online Conference More info Save spot 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

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 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 Research Study

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.