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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.

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 .

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