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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

Meet Julie who miraculously survived SJS/TEN, not once but twice. With the help of her supportive mother Jean, Julie now uses her story to raise awareness, support and inspire other survivors. See video below. https://youtu.be/-Znz5lJTMzM?si=5Kjmvwj7BIbh0AWy&t=79 Her story begins at 1:19 and ends at 23:37.

https://youtu.be/_j3UWsEb5bM

https://youtu.be/rocX38HOUjE

Attention SJS survivors & care supporters Coming winter 2024 : to secure your spot Email: info@sjscanada.org Our FREE four weeks supportive counselling/educational session in collaboration with Elpizo Counselling Service is back.

The month of August is Stevens Johnson Syndrome Awareness Month in the USA. We wish to join our allies and combine our voices to spread awareness here in Canada. Join us and show your support by: Find and follow us on on Facebook. Like, repost, and share our weekly posts. Wear blue on August 18th, the official SJS awareness colour. Share your comments and photos wearing blue on our Facebook page in support of SJS Awareness Month. Tell us your SJS/TEN story

I had a bacterial infection in 2005. After 13 days of taking antibiotics, I developed a lot of bumps on my body, my face swelled up, my eyes and throat started to feel inflamed and irritated. I went to the doctor and was told I had an eye infection and was given sulfa (an eye drop) in addition to the oral sulfa antibiotics that I was already taking. Soon the skin around my face started peeling so I took a picture and sent it to my dad and brother. My brother’s pharmacist friend told him I was having a severe allergic reaction to the medication while my dad and I read up on the side effects of the antibiotics I was taking. By the time I was admitted to the hospital, my eyes were swelled shut, my skin was peeling, and raw from my scalp to torso. At the hospital, doctors stitched amniotic membrane to my eyes in the hopes that I would not lose my vision. I stayed in the hospital for 13 days. After one month they removed the stitches from my eyes but although I was able to see, I could hardly open them since they had become extremely photophobic. In 2012, I met Dr. Chiu who introduced me to PROSE contact lens which allowed me to open my eyes more and drastically reduced the photosensitivity. These lenses have also helped to decrease the irritation and redness of my eyes. Furthermore, I had cataract surgery for both my eyes. My skin has healed although my nailbeds are damaged and fragile. As part of my recovery, I started to hike and became a runner. I was able to train and run many organized races including two marathons. In June 2020, I joined the SJS Canada group and have been delighted by the support that the group provides for each other. Sonia’s care and attention to the members of this group is greatly appreciated, and her leadership has helped gain awareness and momentum for the SJS community. It has been a pleasure to be a part of this group.

Thank you to everyone who joined us for our AGM in May Below are some images from the event! Photos of our 2018 Annual General Meeting

SJS Founder, Sonia Whyte-Croasdaile was featured on Toronto’s news and entertainment show, The Scoop. Sonia took the liberty to help describe the complexities of SJS/TENS as a survivor and advocate to the shows audience. Sonia also highlighted a fund raiser and line up for the event.

Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) represent different degrees of a severe, acute, life-threatening mucocutaneous reaction resulting mainly from drugs. Both are considered a medical emergency that requires hospitalization and management of patients is usually provided in intensive care units or burn centers. By current convention, the following terminology is used: the term SJS is used when the disease involves less than 10% of the total body surface area; and the term TEN is used when the disease involves more than 30% of the body surface area. Medications are the major precipitating cause and no specific treatment modality has been proven effective. Recovery can take weeks to months, and there are numerous long-term sequelae. The recovery journey may look different for each survivor: some are able to resume their normal duties example work, with some modifications, while others are unable to return to work or their normal duties. Many survivors may suffer from psychological complications and low health related quality of life, and require long-term medical follow up. We are here to support you, you DO NOT have to take this journey alone!

I was diagnosed with TEN in early 2016 when I was 28 years old. I was 5th grade teacher at the time, I loved hiking and bike riding, and I was very active in my school community and my church. Initial Symptoms I was taking a combination of prescription medications to help regulate my mood when I started having several eye issues. They became red, itchy, and felt as if they were burning. I went to an eye doctor who prescribed eye drops. My eyes didn’t get any better, and I started to develop flu-like symptoms. I also noticed numerous red spots that covered my arms. Painful blisters started to appear on my lips and inside my mouth, which made it unbearable to eat. In the Burn Unit After a few days in the ER, I was transported to a burn ICU, where I stayed for three weeks. I was essentially unconscious for the first two weeks, and when I awoke the third week, I saw my body wrapped in bandages from head to toe, completely covered in second- and third-degree burns. I was told I had survived Toxic Epidermal Necrolysis and that over 85% of my epidermis and all of my mucous membranes were affected. Recovery Upon discharge from the burn unit, I was assured that everything should be fine moving forward. But within the following days, weeks, and months, it was very clear that things were not fine. My entire epidermis continued to shed like the skin of a snake. My lips and other mucous membranes were patches of raw, bloodied scabs. Chunks of skin fell from my eyelids, ears, mouth, scalp, hair, and every single fingernail and toenail sloughed from my body. I remember just sitting and crying on the bathroom floor staring at a chunk of skin in the shape of part of my foot that had just sloughed off. Life After TEN After five years, I am still constantly reminded of my TEN sequelae, which includes complications with my nails, skin, eyes, esophageal tract, vulva, psychological well-being, and general activities of daily living. Most of my fingernails and toenails are still missing, as the nail matrices were destroyed. The nailbeds are extremely sensitive, and the little slivers of nails that have grown back can be very painful, especially when they get caught on things. Raised scarring and new moles from the burns developed on my back, and the scarring on my face required special laser treatment. While I am grateful to have my vision intact, there are several other ocular complications, such as eyelashes growing in the wrong place and in the wrong direction, extreme dryness and redness, pain, and severe meibomian gland dropout, all of which require ongoing procedures and treatments. I have found some relief through wearing custom Prose lenses and by having the lashes either pulled manually or electro-epilated. Just managing my eyes adds about two hours to my daily routine. Another impact of TEN was salivary gland damage, which has caused increased dryness in my mouth, and requires me to frequently clear thick mucus from my throat. TEN also caused vulvar sequelae, which requires ongoing pelvic physical therapy and the use of various topical creams. These complications also impact relations with my husband. During the first four years after TEN, the vulva was so sensitive that I was unable to ride a bike or wear certain pants due to the large seams in the pelvic region. I am still unable to use tampons during my menstrual cycle. Support for Survivors Ultimately, the psychological and emotional impact of this trauma has proved to be the most challenging aspect. For those coping with the effects of SJS or TEN, be sure to find a support group! I attended an international SJS/TEN conference, where I networked with medical professionals, met other survivors, and found an SJS/TEN support group, which is making an incredible difference in my journey of healing.