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Stevens–Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) are rare but devastating drug reactions that can quickly escalate from flu-like symptoms to widespread skin detachment and mucosal damage. Survivors often face long-term complications such as vision impairment, chronic pain, and emotional trauma. That is why August is recognized worldwide as SJS Awareness Month, with SJS Awareness Day on August 18. It is a time to share stories, honor those we have lost, and advocate for better recognition, earlier diagnosis, and comprehensive care. Why Awareness Makes a Difference Despite their severity, SJS/TEN remain underrecognized by the public and even some healthcare professionals. Increasing awareness is key to improving outcomes: ● Early diagnosis saves lives. Initial symptoms such as fever, sore throat, red eyes, or a rash are often mistaken for common viral illnesses. Awareness can help patients, families, and clinicians recognize the signs earlier and intervene before complications worsen. ● Survivors need long-term care. Many survivors face chronic ocular issues, skin sensitivity, fatigue, and post-traumatic stress. Increased awareness helps validate these experiences and supports access to multidisciplinary follow-up. ● Lack of awareness harms trust. Survivors have described feeling confused and dismissed by healthcare providers unfamiliar with SJS/TEN. Recent research emphasizes the need for clinicians to recognize not just the physical signs, but also the psychological impact of the condition. “ As a survivor, I know first-hand the fear and isolation this condition brings. SJS awareness matters because early recognition can save lives, and understanding can save dignity. Awareness means fewer people will suffer in silence, more will get timely care, and patients and survivors will have the support they need to heal. ” Sonia Whyte-Croasdaile, SJS/TEN Survivor How You Can Get Involved You do not need to be a survivor or clinician to take part in SJS Awareness Month. Small actions can make a big difference: ● Wear blue on August 18 to support SJS Awareness Day. ● Share facts or survivor stories to help raise awareness and make survivors’ voices heard. ● Follow us on social media at sjs.canada on Instagram and Stevens-JohnsonSyndromeCanada and spread awareness by using hashtags like #SJSawareness, #GlowingBlueforSJS, or #ShadesforSJSAwareness. ● Support advocacy organizations by participating in virtual campaigns or spreading educational resources. ● Become a SJS Canada volunteer and help expand reach and impact. ● Support an event! All are free and virtual! Find out more information at: https://www.sjscanada.org/sjs-events Looking Ahead: Strengthening Advocacy and Care While progress has been made in acute care protocols, ongoing gaps remain: ● More research is needed to better understand genetic risk factors, pathophysiology, and effective therapies. ● Access to long-term multidisciplinary care is essential. This includes dermatology, ophthalmology, pain specialists, and mental health support, which are not always readily accessible to patients. ● Education within healthcare systems is critical. Increasing awareness among providers improves recognition, referral pathways, and survivor support. Conclusion SJS/TEN are rare, but for those affected, their impact is lifelong. Awareness Month is more than a calendar event. It is a global effort to educate, prevent, and support. Whether you are sharing a post, wearing blue, or learning something new, your voice helps make SJS/TEN visible. This August, let us shine a light on SJS/TEN and ensure no one faces it alone. References 1. O’reilly P, Walsh S, Bunker CB, Ryan S, Natella PA, Colin A, Simpson J, Barry LA, Meskell P, Dodiuk-Gad R, Coffey A. The quality-of-life impact of Stevens–Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) on patients’ lives: an interpretative descriptive qualitative study. British Journal of Dermatology. 2025 Jan;192(1):85-91. 2. SJS Canada. SJS Awareness Day. https://www.sjscanada.org/sjs-awareness-day 3. Stevens–Johnson Syndrome Foundation. SJS Awareness Month. https://sjsupport.org/?page_id=449

Stronger Than the Storm of SJS/TEN: A Nurse Educator’s Survival, Faith, and Renewal Karen Worthy, Ph.D., MPH, RN, CNE, CNEcl University of South Carolina, College of Nursing Professor   On January 25, 2020, Dr. Karen Worthy initially believed she was coming down with the flu. The familiar fever, cough, and muscle aches mirrored symptoms she had experienced the year before. But as the day wore on, her condition rapidly changed. New, alarming symptoms emerged—signals that this was not the flu at all, but something far more serious. She was facing a medical emergency.   I got really sick at work; I just did not feel well. The following day, I felt worse, so I decided to go to a clinic at the local pharmacy. I thought they would just give me medication for the flu, such as an antiviral medication, such as Tamiflu, a cough suppressant, and maybe a decongestant, and that things would be just fine,” said Dr. Worthy. “During my assessment, the nurse practitioner stated I had a fever of 104°F, and she was looking very concerned. And then she said that my face was beginning to swell right before her eyes. An emergency was unfolding, and time could be the difference between life and death.”   Dr. Worthy was transported by ambulance to a local hospital in Columbia, SC, where her condition deteriorated rapidly. Her face was becoming more edematous, and her lips and skin began to blister. Due to the risk for airway closure, she was also facing the likelihood of intubation. Even as they worked on emergency treatment options, there was one thing Dr. Worthy and her healthcare team had yet to figure out: What exactly were they treating? There was no definitive diagnosis.   “The doctors did not immediately recognize what medical condition I had developed but knew it was atypical and life-threatening. They quickly formed an interdisciplinary team including specialists from Intensive Care, Emergency Medicine, Dermatology, and Internal Medicine to care for me and my rare condition. My daughter, Dr. Ja’Pel Sumpter, MD, MPH was there as well; they included her in their discussions and treatment plans.” “Ultimately, it was the dermatologist who diagnosed my condition as Stevens-Johnson syndrome,” Dr. Worthy said. The diagnosis proved to be a crucial step in prescribing the proper treatment as quickly as possible.   Stevens-Johnson syndrome (SJS) was the correct diagnosis; however, SJS is on a continuum with the more severe, toxic epidermal necrolysis (TEN). They are no longer considered separate conditions but SJS/TEN. SJS/TEN is a severe skin reaction most often triggered by particular medications, including sulfur drugs, seizure medications, and non-steroidal anti-inflammatory drugs (NSAIDs) called oxicams. In many cases, the exact cause is never definitively determined as in Dr. Worthy’s case.  It could have been something as simple as an over-the-counter pain reliever or fever reducer medication she had taken just two days before her hospitalization.   SJS/TEN is a rare disease, affecting 1 to 2 per million people each year, with SJS being more common than TEN. When more than 30% of the total body surface area (TBSA) is affected, the patient is on the more severe end of the SJS/TEN continuum, with a 25-35% mortality rate. This condition not only ravages the epithelial tissues of the body but leaves the patient susceptible to infection, multi-organ system failure, and other life-threatening complications. For this reason, it is imperative that individuals affected by SJS/TEN are treated at a multi-disciplinary burn center with the requisite experience to treat this complex condition.   Immediately after the diagnosis of SJS, on January 26, 2020, Dr. Worthy was transferred to the Joseph M. Still Burn Center at Doctors Hospital in Augusta, GA, where in the past year alone, more than 100 cases of SJS/TEN were treated. Dr. Worthy was where she needed to be to receive the necessary treatment to save her life.   Dr. Worthy’s daughter, Ja’Pel, recalls, “Dr. Mullins was the first person I talked to when I arrived at the Burn Center. He brought me into a room and told me the prognosis and exactly what to expect, and an estimated timeframe of how long she would be in the hospital. He was absolutely amazing, and any time I had any questions, he was always more than willing to discuss any questions I had. You could tell from his humble disposition and compassion that he was made for this job. There aren’t many people who can build such a rapport the way he could with his patients and their families. My mother always said, that in life, but especially in healthcare, people don’t care how much you know until they know how much you care. He definitely got me through the initial shock of everything.”   Living in North Carolina at the time, Ja’Pel had never been to Augusta and had nothing with her but an overnight bag. She was alone in a strange city.  After getting her mother admitted, by the time she left the Burn Center to look for a place to stay, it was 3:00 in the morning. That’s when the Burn Foundation of America intervened and offered Ja’Pel a room in the Chavis House which offers free lodging and daily meals for family members and loved ones of patients in the Burn Center during the extent of their stay and recovery period.   “The Chavis House was an absolutely amazing resource to have for people like me who have no local family and are there alone. I had never been to Augusta, nor did I know anyone there, but I quickly started building relationships with the other family members. We stayed in the house together, prayed together, and we would check on each other daily to make sure everyone was okay. We became each other's support system.  So much was going on with my mother’s care until I need to be close by.  Living at the Chavis House made it so easy for me to just walk to the hospital if needed. It was literally across the street from the hospital, so if anything happened, I could immediately return to the hospital,” said Ja’Pel. “It was a very trying time, but it also rebuilt my faith in humanity.”   Dr. Worthy and Ja’Pel were in Augusta for an entire month. During that time, Dr. Worthy experienced extensive physical and medical changes. Her outward appearance and her overall health changed as SJS/TEN ran its course.   “SJS/TEN causes the body to go through a complete regeneration,  and you can’t stop that process. My skin sloughed off in several areas of my body. I had to have two skin graft surgeries. My nails detached and fell off. I became legally blind in my right eye. I was intubated and on the ventilator for approximately two weeks to protect my airway”, she said.   The toll SJS/TEN took on her was extensive. Her eyesight deteriorated. Her shoulder-length hair had to be shaved off in the treatment process. Her skin both looked and felt different, with a new sensitivity to direct sunlight. But none of that mattered to Dr. Worthy. When she looked in the mirror, she saw a different Karen on the outside, but she knew what made her who she was and what she stood for remained the same. She was grateful and appreciative of every day.   “I know that people love their hair, and I loved my hair at the time, but it’s okay because your hair will grow back…your skin will regenerate…your vision will get better. And, as I shared with many people about those features, it will all get better over time or perhaps, it will not. If my hair does not grow back, I’ll wear a hair system or wig.  If my vision does not improve, I’ll wear corrective lenses. If my skin doesn’t regenerate properly, there are many dermatological interventions I can explore. I know who I am, and I know the journey I have traveled.  These physical aesthetics are not important to me. My family and I will move forward from today. Every day is like the first day of the rest of my life.  It’s all a blessing; I am blessed! ”said Dr. Worthy.   “My mom is a real trooper,” said Ja’Pel. “Once she was extubated, we actually got her out of bed that same day. She was very motivated. Because of her nursing background, knowledge, and skills, she knew the importance of ambulation as foundational for beginning her recovery process.”   Although SJS/TEN resulted in many changes to Dr. Worthy’s body, some things remained the same. These are the essence of who she is and why she is loved and respected by many. No matter what the trials, Dr. Worthy is steadfast in her faith in God, her love of family and friends, her positive spirit, and her nurse’s intuition. She states, “This was the process I had to go through, and nothing could stop or alter that process. Through God’s unwavering grace, the prayers and love of my family and friends, and the skill and knowledge of my medical team, today, my skin has regenerated, my vision is 20/20 bilaterally without corrective lenses, and I walk over a mile a day.  I do not take credit for my progress—I give all the glory to My God Almighty.”   Five years seems like ages ago now. As a nurse and a professor educating future nurses, she is in the right place and profession.  She is so proud and thankful for all the nurses who were and still are a part of her SJS/TEN journey.   “I would not have chosen a different profession. Nursing is embedded in the core of my heart and soul. I am passionate about nursing, education, and my students as we are educating future nurse leaders, stewards of the community, and future researchers. We are phenomenal providers and a vital part of the interdisciplinary healthcare team. My family and I could not have asked for a better experience during such an unexpected, vulnerable time.  As nurses, their compassionate prayers along with genuine acts of kindness and caring (i.e., therapeutic touch, smiles, kind words, etc.) enhanced a positive outcome. We are the heart of healthcare!”   Dr. Worthy further reflects, “Before developing SJS/TEN, I had never been admitted in the hospital, never really been sick, no diagnosis of diabetes or hypertension, or any other comorbidities. I ran two miles every day. I didn’t have any health issues. To this day, my providers still do not know what caused my condition.”   Given my health and the life I lead, I often hear people say, ‘Well, you must have asked God a million times why you?’ Never. Not once did I ever ask God why me. I asked Him, ‘Why not me?” I know everything happens for a reason, and this challenge only strengthened my faith in God as I remain thankful for all my many blessings.   I am grateful to have survived SJS/TEN, and I am a stronger, more purpose-driven Karen because of it.  Afterall, “I’m a NURSE! What’s your superpower?”   Helpful Links   Learn more about the Burn Foundation of America . Read more about Stevens-Johnson syndrome and TEN . Explore more ways BRCA supports patients and their families .

Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) are rare but extremely serious conditions often triggered by medications. These severe drug reactions can cause widespread skin detachment and mucosal damage, resembling second-degree burns. However, what many people don’t realize is that SJS and TEN affect far more than just the skin. These conditions can damage multiple internal organs, making treatment complex and demanding. That’s where a multidisciplinary team comes in. In the early stages of SJS/TEN, identifying and discontinuing the causative drug is the most urgent priority. Once this is done, patients need immediate transfer to a specialized burn center or intensive care unit, where they can receive care from a coordinated team of medical professionals. This multidisciplinary approach has become the cornerstone of modern SJS/TEN management. Why a Team Approach Matters SJS/TEN can impact the lungs, gastrointestinal tract, liver, kidneys, eyes, genitalia, and more. Because no single doctor can manage all these complications alone, an effective team often includes: Dermatologists to diagnose and monitor the skin reaction. Burn surgeons and wound care nurses  to manage the open skin lesions like burn wounds. Ophthalmologists to address eye involvement, which can lead to scarring or vision loss if untreated. Gynecologists or urologists  to treat mucosal involvement in the genital or urinary tracts. Internal medicine specialists and intensivists  to monitor and manage systemic symptoms, fluid balance, infections, and organ support. Dieticians  to ensure adequate calorie and protein intake during the body’s healing process. Psychologists and social workers  to support patients’ mental health and recovery. Pharmacists to assist in identifying the causative drug, recommending safe alternatives, and managing complex medication regimens during recovery.   According to Canadian and international studies, patients managed in burn units by teams that include dermatologists, intensivists, plastic surgeons, and others have better outcomes—including lower mortality and fewer long-term complications. What Does Care Look Like in Practice? In the hospital, the team will work together to monitor for and prevent complications. Burn nurses provide gentle dressing changes with non-stick materials that don’t damage fragile healing skin. Pain specialists help manage the significant discomfort that patients experience. Ophthalmologists might use lubricating eye drops or perform procedures to prevent long-term eye damage. Internists carefully balance IV fluids, electrolytes, and nutrition while watching for infections, organ dysfunction, and sepsis. Each specialty plays a unique but interconnected role. Without this coordination, vital complications—such as respiratory issues or genital scarring—can go unnoticed or untreated. Unfortunately, many SJS/TEN survivors who do not receive comprehensive care report long-term complications like vision loss, sexual dysfunction, chronic fatigue, and emotional trauma. What Happens After Hospital Discharge? Recovery from SJS/TEN doesn’t end when the skin heals. Survivors often face physical, emotional, and psychological challenges. A multidisciplinary follow-up team may include dermatology, ophthalmology, psychiatry, and physical therapy. Patients may also need ongoing wound care and rehabilitation. That’s why education, communication, and long-term planning are essential parts of the discharge process. Conclusion SJS and TEN are not just skin diseases—they are complex, systemic conditions that require more than a one-size-fits-all approach. A multidisciplinary team is essential not only for survival during the acute phase, but also for minimizing long-term complications and restoring quality of life. Whether it’s saving someone’s sight, preventing kidney failure, or supporting mental health, each team member plays a crucial role. Together, they make the difference between surviving SJS/TEN—and truly healing from it.     REFERENCES 1. Martinez Villarreal, J. D., Cardenas-de la Garza, J. A., Ionescu, M. A., et al. (2025). Stevens‐Johnson Syndrome and Toxic Epidermal Necrolysis: A Review of Current Management and Innovative Therapies . International Journal of Dermatology, 64(7), 1164–1172. https://doi.org/10.1111/ijd.17768 2.  Surowiecka, A., Barańska-Rybak, W., & Strużyna, J. (2023). Multidisciplinary Treatment in Toxic Epidermal Necrolysis . International Journal of Environmental Research and Public Health, 20(3), 2217. https://doi.org/10.3390/ijerph20032217 3. Papp, A., Sikora, S., Evans, M., et al. (2018). Treatment of Toxic Epidermal Necrolysis by a Multidisciplinary Team: A Review of Literature and Treatment Results . Burns, 44(4), 807–815. https://doi.org/10.1016/j.burns.2017.10.022 4. Shanbhag, S. S., Chodosh, J., Fathy, C., et al. (2020). Multidisciplinary Care in Stevens-Johnson Syndrome . Therapeutic Advances in Chronic Disease, 11, 2040622319894469. https://doi.org/10.1177/2040622319894469

Survivor's Stories We would be honoured to share your experience as a beacon of support and unity. Sonia's City TV Interview Julie’s story Meet Julie who miraculously survived SJS/TEN. YC’s story I was a completely healthy individual until I got the flu vaccine... Jeremy’s story I had a bacterial infection in 2005. After 13 days of taking antibiotics, I developed... Kathleen’s story My name is Kathleen, and I am from Washington, USA, just north of... Anastasia’s Story I was diagnosed with TEN in early 2016 when I was 28 years old. I was 5th grade... Jane’s story My name is Jane Grady and I’m an SJS/TEN survivor. I was prescribed a medication ... Jennifer’s Story My name is Jennifer Lane. I have just turned 48, and this is my SJS/Ten story. It all... Bruce’s Story Late February 2005, I developed symptoms of fever, headache, and... Kim’s Story The impact of Stevens Johnson Syndrome affects each victim differently depending on... Dr. Karen's Story Karen Worthy, Ph.D., MPH, RN, CNE, CNEcl University of South Carolina, College of Nursing Professor...

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 Multiple Dates SJSC Support Group Wed, Aug 20 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

A brief history Stevens-Johnson Syndrome Canada (SJSC aka SJS Canada) is a registered, non-profit organization dedicated to spreading awareness about Stevens-Johnson Syndrome, an extremely rare life-threatening medical illness. SJS Canada was born in the heart of an SJS/TEN survivor, Sonia Whyte-Croasdaile, in 2012. She battled SJS/TEN for almost 6 weeks and survived a near-death experience. While in the hospital, she was informed that SJS/TEN was rare. To her dismay, she faced multiple obstacles in her quest for psychological support. There were no resources available in Canada to support her journey to recovery. The local doctors and specialists she visited had not encountered SJS before. Some had not even heard of the disease. She had no one or nowhere to turn to for support as she encountered drastic changes to her physical appearance. Sonia purposed within her heart that no other Canadian should travel this journey alone. With the help of her supportive family and friends, SJS Canada was formed. Her miraculous survival inspired her to create a well-needed outlet to spread awareness about this life-threatening medical illness that burns the body from the inside out. SJS Canada is a registered and dedicated non-profit organization committed to raising awareness, providing support, and advocating for individuals affected by Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) in Canada and around the world. The organization aims to educate the public, healthcare professionals, and policymakers about these rare and life-threatening conditions to improve patient outcomes and quality of life. Key Objectives following our Strategic Directions: 1. Awareness: SJS Canada works tirelessly to increase public and professional awareness of SJS/TEN, highlighting the importance of early diagnosis and appropriate treatment. Through campaigns, events, and educational resources, the organization strives to ensure that SJS is recognized and treated promptly to prevent severe complications. 2. Support: The organization offers crucial support to patients, survivors, and their families. This includes emotional support, information on managing the condition and connecting individuals with medical experts and fellow survivors. SJS Canada provides resources that help patients/survivors navigate the challenges of living with SJS/TEN, from initial diagnosis to long-term recovery. 3. Advocacy: SJS Canada advocates for improved healthcare policies and practices related to the diagnosis, treatment, and management of SJS/TEN. The organization collaborates with healthcare professionals, researchers, and policymakers to promote better understanding and care for those affected. 4. Research: By supporting and promoting research, SJS Canada contributes to advancing medical knowledge about SJS/TEN. The organization is involved in initiatives that aim to discover more about these conditions' causes, prevention, and treatment. Programs and Services: - Educational Outreach: SJS Canada conducts educational programs and workshops to inform healthcare providers, students, and the general public about SJS/TEN. These initiatives are crucial for fostering early recognition and improving patient care. - Patient and Family Support: The organization offers resources such as support groups, online communities, and one-on-one assistance to help patients and families worldwide cope with the emotional and physical challenges of SJS/TEN. - Awareness Campaigns: Throughout the year, especially during SJS Awareness Month, SJS Canada organizes campaigns to raise visibility for the condition, share survivor stories, and educate the public on identifying and responding to SJS/TEN. - Advocacy Efforts: SJS Canada engages with government bodies and healthcare institutions to advocate for policies that improve patient care, support research, and ensure access to necessary treatments. Incidence, Impact and Challenges in Canada: SJS is extremely rare, with an estimated incidence of 1 to 6 cases per million people per year in Canada. Due to its rarity, awareness among healthcare professionals and the public is crucial for early diagnosis and treatment. SJS Canada has been making a significant impact by connecting patients and families with vital resources, advocating for improved healthcare practices, and fostering a supportive community for those affected by SJS/TEN. Their efforts have helped to bring SJS/TEN into the spotlight, ensuring that more people are aware of these conditions and that patients receive the care they need. - Awareness: Despite its severity, SJS is not widely known, leading to potential delays in diagnosis and treatment. - Support Systems: Patients may face long-term complications, including vision problems, skin scarring, and psychological effects, necessitating ongoing medical and emotional support. - Research and Advocacy: Efforts are ongoing in Canada to increase awareness, improve treatment protocols, and support research into the causes and prevention of SJS. On the whole, SJS Canada continues to be a vital resource for individuals affected by Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis. Through its comprehensive approach—spanning awareness, support, advocacy, and research—the organization plays a crucial role in improving the lives of those affected by these severe conditions in Canada and globally. We are dedicated to providing support for survivors, family, friends, and caregivers in the SJS/TEN community. Be part of our community and make the difference. Our Mission Our Mission: Supporting survivors and promoting global SJS/TEN education, advocacy, and research for prevention and treatment. Our Vision: A world where SJS/TEN is widely recognized, understood, cured and prevented. SJS Canada Values: SJSC upholds respect, transparency, accountability, collaboration, fostering empowerment and accessibility, and providing support for those affected by Stevens-Johnson Syndrome/TEN SJS Canada Aims: Promote health by providing people suffering from SJS/TEN as well as their families and caregivers with access to related counselling, support groups and information programs. To advance education by providing workshops, forums and seminars about the SJS/TEN to the public and medical professionals. SJS Canada Strategic Directions: 1 Sustainability, Fundraising, Networking & Collaboration SJSC is committed to: sustainability in financial planning and management. gaining multiple sources of sustainable funds. building networks and partnerships with organizations. 2 Education & Awareness SJSC is committed to raising awareness through education of survivors, medical and general communities. 3 Marketing & Communications: SJSC is committed to developing our marketing and communication strategy to increase our reach.