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Volunteer CONSIDER BECOMING A PART OF OUR VOLUNTEER TEAM TODAY. Our volunteers are exceptional. SJS Canada is very thankful for the great work that our volunteers do. Without volunteers, we could not exist. We always seek volunteers to join our team and help us bring awareness to this deadly disease. Volunteer Application Showing Appreciation to Our Volunteers MAY 2019 Showing Appreciation to Our Volunteers MAY 2018

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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.

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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

All Posts Homepage Features News and Updates Image Gallery Research Support Survivor Stories Updates Upcoming Events Volunteers Events Felipe Simoes Cayres Apr 1 3 min SJS Awareness Month Challenges | This is how you can join the fight. During August, we have some challenges you can join to support us in our fight. Check it out. August 3rd Sunglasses Day Challenge:... 14 views 0 comments 1 like. Post not marked as liked 1 hiep725 Feb 8 1 min Memorial Video 1 https://youtu.be/_j3UWsEb5bM 8 views 0 comments 1 like. Post not marked as liked 1 hiep725 Jan 29 1 min Memorial Video 2: In Loving Memory https://youtu.be/rocX38HOUjE 16 views 0 comments 1 like. Post not marked as liked 1 sjsandtensgroupcan Oct 13, 2021 1 min Supportive Counselling & Education for survivors, families and friends. Attention SJS survivors & care supporters Coming winter 2024 : to secure your spot Email: info@sjscanada.org Our FREE four weeks... 37 views 0 comments 1 like. Post not marked as liked 1 sjsandtensgroupcan Sep 20, 2021 1 min Julie’s story Meet Julie who miraculously survived SJS/TEN, not once but twice. With the help of her supportive mother Jean, Julie now uses her story... 115 views 0 comments 1 like. Post not marked as liked 1 sjsandtensgroupcan Aug 1, 2021 2 min YC’s story I was a completely healthy individual until I got the flu vaccine in October 2019. I was tired and a little achy the next couple of days... 76 views 0 comments 1 like. Post not marked as liked 1 sjsandtensgroupcan Aug 1, 2021 2 min Jeremy’s 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... 61 views 0 comments 1 like. Post not marked as liked 1 sjsandtensgroupcan Mar 16, 2021 4 min Kathleen’s story My name is Kathleen, and I am from Washington, USA, just north of Portland, Oregon. I had my first reaction to Steven Johnson Syndrome... 61 views 0 comments 1 like. Post not marked as liked 1 sjsandtensgroupcan Mar 16, 2021 3 min Anastasia’s Story 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... 29 views 0 comments 1 like. Post not marked as liked 1 sjsandtensgroupcan Feb 12, 2021 1 min SJS Canada founder Featured on Toronto’s The Scoop SJS Founder, Sonia Whyte-Croasdaile was featured on Toronto’s news and entertainment show, The Scoop. Sonia took the liberty to help... 15 views 0 comments 1 like. Post not marked as liked 1 sjsandtensgroupcan Aug 17, 2020 5 min Jane’s story IT’S TROUBLING TIMES WHEN THE SOLUTION BECOMES THE PROBLEM………. My name is Jane Grady and I’m an SJS/TEN survivor. I was prescribed a... 38 views 0 comments Post not marked as liked sjsandtensgroupcan Aug 12, 2020 1 min AUGUST is Stevens-Johnson Syndrome Awareness month 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... 14 views 0 comments 1 like. Post not marked as liked 1 sjsandtensgroupcan Aug 4, 2020 5 min Jennifer’s Story My name is Jennifer Lane. I have just turned 48, and this is my SJS/Ten story. It all started on August 1, 2017. I was in Clear Lane, MB... 37 views 0 comments Post not marked as liked sjsandtensgroupcan May 31, 2020 1 min STUDIES ON GENETICS A Research titled: – STUDIES ON GENETICS is currently been conducted by: Dr. Bruce Carleton Chair, Division of Translational... 21 views 0 comments Post not marked as liked sjsandtensgroupcan Feb 25, 2020 2 min Bruce’s Story Late February 2005, I developed symptoms of fever, headache, and nasal congestion. To alleviate my symptoms, I decided to take different... 51 views 0 comments Post not marked as liked sjsandtensgroupcan Feb 24, 2019 1 min SJS Annual General Meeting 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 15 views 0 comments Post not marked as liked sjsandtensgroupcan Feb 23, 2019 2 min Kim’s Story The impact of Stevens Johnson Syndrome affects each victim differently depending on the severity and duration of the illness. Here’s one... 51 views 0 comments Post not marked as liked sjsandtensgroupcan Mar 2, 2018 1 min The Lonely Path To Recovery Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) represent different degrees of a severe, acute, life-threatening... 17 views 0 comments Post not marked as liked