Search Results

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

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. ​ ​ ​ SJS Awareness Month 2024 Special Days Explanation ​ August 7th – Hair Loss Awareness Day Did you know that “telogen effluvium” is a condition where your hair becomes thin, and fall out during periods of extreme stress? Common examples include period of time right after childbirth, being in an accident, or experiencing psychological stress. Did you know that telogen effluvium has been estimated to effect almost 1/4 of long-term survivors of SJS/TEN 1 ? This is after they have left the hospital and survived the acute phase of the disease. Take a moment today to appreciate the hair that you have! August 14th – Chest Complications Awareness Day An estimated 40% of SJS/TEN patients experience damage to the tissue lining the inside of the lungs (i.e. exposed to air) 1 . This damage to the tissue lining can lead to permanent changes to lung function and increases risk of infection and ability to breathe. Children affected by SJS/TEN are especially affected by this. Remember to cherish your healthy lungs by taking deep breaths of fresh air on a nice walk through nature! August 18th - SJS Awareness Day Activities: 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 21st – Digestive Issues Awareness Day Long-term complications with the digestive tract are rarer in survivors of SJS/TEN. However, the most common complication is esophageal stricture that occurs between 2 months and 2 years after the acute phase of SJS/TEN. The esophagus is the food pipe connecting our mouth to our stomach, and a stricture can result in difficulty swallowing, feeling of food getting stuck, and pain! Taking a moment today and pay attention to the food you eat and how it travels down your esophagus…without pain! ​ August 28th – Soft Shoe day ​ People familiar with SJS/TEN understand the skin peels, but consider the skin on the bottom of your feet peeling! As new skin grows, the affected areas are extremely sensitive to touch and the bottom of the feet or no different. Many find walking to be extremely painful and appreciate soft shoes as it allows them to be more mobile during recovery. If you live by a park, baseball diamond, or a rocky beach – try walking on gravel/small rocks on your bare feet! ​ SJS Awareness Month 2023 Sunglasses Day Activities: 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. Visual Accessibility Day Activities: 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? Virtual Move-A-Thon Activities: 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). August 18th SJS Awareness Day Activities: 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 Hat Day Activities: 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. Eye Care Day Activities: 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. Virtual Town Hall Activities: Join us at our Virtual SJS Town Hall Join us on the last Thursday of every Awareness Month for our virtual Town Hall to learn the latest on our initiatives and the latest SJS/TEN related research.​ 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. We kindly ask you to post your photo or video as you engage in these activities with #sjscantstopme

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 Awareness Month Town Hall Thu, Aug 29 Zoom Town Hall Aug 29, 2024, 7:30 PM – 9:00 PM Zoom Town Hall Aug 29, 2024, 7:30 PM – 9:00 PM Zoom Town Hall +13 more RSVP Multiple Dates SJSC Support Group Wed, Sep 18 https://us02web.zoom.us/j/82137370516?pwd=W Sep 18, 2024, 3:30 PM – 4:30 PM https://us02web.zoom.us/j/82137370516?pwd=W Sep 18, 2024, 3:30 PM – 4:30 PM https://us02web.zoom.us/j/82137370516?pwd=W RSVP 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

Thu, Aug 29 | Zoom Town Hall SJS Awareness Month Town Hall Register now Time & Location Aug 29, 2024, 7:30 PM – 9:00 PM Zoom Town Hall Guests + 13 other guests Register now Share this event