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Find a Doctor Do you need help finding an SJS/TEN Doctor In your area? We can help you! Send us a message and we’ll get back to you shortly. First name Phone Email Location Your message Send Thanks for submitting! We'll contact you shortly. Are you a Doctor? Full Name Email Code Phone Speciality Location Your message Send Thanks for submitting! We'll contact you shortly. Do you want to register to be in our SJS/TEN Doctor's referral list? Register here.

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, Sep 17 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

Testimonials I am now 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. ✌️🌸 Jane G. I experienced Stevens-Johnson Syndrome (SJS) in March 2005. I discovered Sonia’s ‘SJS Canada Support Group’ in 2020. SJS is scary, and the long-term symptoms af fect victims diff erently. For me, it’s mostly been an ongoing difficulty with my eyes. Many victims experience SJS much more intensely. SJS Can is a place for survivors and/or guardians to be heard, ask questions, share experiences, and feel safe. It reminds us we’re not alone in this fight and that brighter days are ahead. I greatly appreciate the availability and consistency of Sonia’s group. I respect and am grateful for the work Sonia puts into moving the group and thus SJS awareness forward. Sonia is an example of professionalism and commitment and I really appreciate the community and fellowship her group offers. Jeremy F. My name is YC and I experienced Steven's Johnson's Syndrome (SJS) in November 2019. I discovered Sonia’s ‘SJS Canada Support group in 2021. When I was first diagnosed with SJS, I thought it was something short term and that I would be able to fully recover and resume my life as normally as before. I soon realized that I may be dealing with long term/permanent issues. SJS Canada support group has helped me cope with my diagnosis and have provided valuable information pertaining to treatment and advice. It has been wonderful getting to know the members of the group and hearing their stories. Sonia’s efforts in organizing the meetings and finding guest speakers are greatly appreciated. YC In 2014 at the age of 52 I was hospitalized due to an allergic reaction to a medication which caused my immune system to go out of control and ultimately diagnosed as Stevens Johnson Syndrome. It was so bad that I was not expected to survive but with excellent medical intervention and a brilliant ophthalmologist and surgeries, 7 years later I still have my vision although the trauma of SJS will always be there. I'm grateful for all the support I have received from the SJS TENS Grp of Canada and the information they continually provide. It's a very rare disease and can be life threatening but I am proof that it can be beaten. Paul RG I have learned so much about the SJSCA Support group. I was very hurt learning about the ordeal the founder, my friend and former classmates Sonia Crossdale went through. Mrs Crossdale a strong woman of God be bless and continue the fight in Jesus's name. Marlene A. Hi Sonia, one thing I have learned through this journey is that Angels are all around us. You may not see them but they show themselves when needed. Thank you for all you have done. Dennis P.

Support Group Most often when an individual is trying to cope through challenging times, family members and friends may sympathize, but they don’t always know what to say or the best ways to help. Reasons to join our SJS/TEN Support Group: We care for supporters and SJS/TEN survivors on the recovery journey. The group was developed to connect those of us who are dealing with similar challenging circumstances—the long-term effects of SJS/TEN. Through sharing our experiences, we can offer support, encouragement, and comfort to each other and receive the same in return. The SJS/TEN recovery journey can be very challenging. Therefore, one of the best medicines is often the voice of people who have been in your shoes. Our monthly meetings allow personal conversations with expert medical specialists in the SJS/TEN field. Our Support Group is a safe and nurturing space where individuals come together to share experiences, encouragement, and foster personal growth. Our mission is to empower each member their journey to better health through connection, understanding, and shared resources. Join us as we support one another in achieving our wellness goals and building a healthier future together. Read more about SJS treatment info@sjscanada.org Name Email Subject Your message Send Thanks for submitting! Regional Support What is the study about? Survivors of Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) face numerous psychological and physiological challenges that significantly affect their quality of life. Many experience difficulties in returning to work and maintaining relationships. A substantial number, approximately 50%, remain hesitant to take medications even five years after their discharge. Feedback from patients, family caregivers, and clinicians indicates that current general quality of life (QoL) measures do not adequately reflect the unique experiences of SJS/TEN survivors. To address this gap, our project aims to develop and test a specific QoL outcome measure tailored for individuals affected by SJS/TEN, which we have named QoLTEN. We have created a draft version of this measure and would like to invite you to participate in a two-round survey designed to evaluate how effectively QoLTEN captures your quality-of-life experiences. Your input will be invaluable in refining this tool to better serve the needs of SJS/TEN survivors. Who is on the research team? This study is led by Professor Pauline O’Reilly from the Department of Nursing & Midwifery at the University of Limerick. The research team also includes Professors Sarah Walsh, Saskia Ingen Housz-Oro, Chris Bunker, Roni Dodiuk-Gad, Donal Fortune, Ailish Hannigan, and Ms. Sheila Ryan. Together, they are dedicated to advancing our understanding of quality of life for survivors of SJS/TEN. Who can participate? We are inviting adults who had SJS/TEN to take part in the two round online survey. What does it involve? Participants will be invited to take part in a two-round survey, with each round taking approximately 20 minutes to complete. The survey will be conducted online using GDPR-compliant software (Qualtrics). If you consent to participate, you will receive a link to the first survey, which will include the QoLTEN measure along with some additional questionnaires, including a brief demographic survey and two other quality of life assessments. Two weeks later, you will receive another link to repeat the process, allowing us to incorporate any feedback you provided into QoLTEN. The insights gathered from this study will be instrumental in finalizing the development of the QoLTEN measure. If you choose to participate, your name will be entered into a draw for a voucher or gift as a token of appreciation. What are the benefits? We hope that QoLTEN will provide significant benefits to patients diagnosed with SJS or TEN in the future. This initiative represents a practical step towards addressing the unique needs of SJS/TEN patients and has the potential to enhance care by aiding clinicians in assessing their condition and developing appropriate treatment plans. Furthermore, QoLTEN aims to facilitate communication between clinicians and patients, enabling more meaningful discussions about how the condition impacts their lives. What are the risks? There are no known risks associated with this research project. Participation in this study is entirely voluntary. If at any point you decide that you no longer wish to participate, you are free to withdraw without any consequences. Your decision to stop participating will be respected, and there will be no negative repercussions for changing your mind. How will data be protected? The Data Controllers for this study are the University of Limerick, Plassey, Limerick. All information collected from the survey will be kept confidential, with password protection applied to each file on the university’s computer systems. The Principal Investigator will securely store all data, including consent forms. Participants will not have their names attached to any published information; instead, they will be assigned a study ID code. Once the study is completed, all data will be retained for seven years in accordance with the Data Protection Act (2018) and will then be securely erased from electronic sources, including audio files, with any hard copies being shredded. The University of Limerick will not disclose your personal data to any third parties. For more information on Data Protection at the University, please visit www.ul.ie/dataprotection. You can also reach out to the Data Protection Officer at dataprotection@ul.ie or by writing to the Data Protection Officer, Room A1-073, University of Limerick, Limerick. How are the results shared? The data collected from the surveys will be analyzed and compiled by Professor Pauline O’Reilly and the research team. The primary aim of the surveys is to assess how effectively QoLTEN measures your quality-of-life experiences. The findings from this research will be submitted for publication in a peer-reviewed journal. Rest assured, the names of research participants and any identifying details will not be included in any publications.

Active Campaigns SJS Canada Virtual “Move-a-Thon” Fundraiser 2024 Register Here Join the SJS Move-a-Thon 2024 Fundraiser: Move for Those Who Can't From August 16-19, we invite you to be a part of something truly meaningful. Across Canada and the United States, people will be walking, running, or biking to support survivors of Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN). These rare, but devastating skin conditions change lives forever. Together, we can help them on their journey to recovery. Move for Those Who Can't Imagine the unimaginable pain of your skin burning from the inside out. This is the reality for those suffering from SJS/TEN. Many survivors are left with lifelong consequences that make it difficult or impossible to move freely. By participating in the SJS Move-a-Thon, you are not just moving your body; you are moving hearts and minds towards a cause that needs your support. Why Participate? Your participation in the Move-a-Thon sends a powerful message of solidarity and hope to survivors of SJS/TEN. Every step you take, every mile you bike, directly contributes to providing survivors with essential resources such as supportive counseling, educational sessions, and genetic testing through partnerships with health professionals. Your efforts help to rebuild lives and restore hope. Join us in this journey of compassion and action. Let’s come together to make a tangible difference. Your support will provide survivors with the care and support they desperately need, showing them they are not alone. How You Can Help: Participate: Walk, run, step, bike or move from August 16-19. Donate: Make a secure donation and help us reach our goal (campaign ends Sept, 2024) Spread the Word: Follow us on social media for updates and share our cause with your community. Together, we can bring awareness to SJS/TEN, support survivors, and make a real difference. Let’s move for those who can't. Join the SJS Move-a-Thon and be a part of a movement that changes lives. WE THANK YOU IN ADVANCE FOR YOUR SUPPORT. Join us in the fight against the disease that burns the body from the inside out because TOGETHER, WE ARE STRONGER . Contact Us Help us on this fight! Donate Now

Contact Get in Touch Email BN info@sjscanada.org | 81927 7393 RR0001 Name Email Subject Your message Send Thanks for submitting! We Need Your Support Today! Donate

Events Calendar September 2025 Today Mon Tue Wed Thu Fri Sat Sun 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 3:30 PM SJSC Support Group +1 more 18 19 20 21 22 23 24 25 26 27 28 29 30 1 2 3 4 5 6 7 8 9 10 11 12

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...

SJS Educational Do you know what's SJS? SJS and TEN represent different degrees of severe, acute, life-threatening mucocutaneous reactions. It causes the skin to become red and purple, tender, and peel away from the body. Know more SJS Awareness Month Read more... SJS Information Poster Download Poster Sunnybrook Magazine Sonia’s Story Read story Survivor's Stories Find a Doctor Read more... SJS Facts Sheet Download Sheet A case of TEN (with Dr. Neil Shear- Sunnybrook hospital): Read story Supportive Story Sharing: Understand the Effect of SJS/TEN on Cognition, Emotion, and Behavior: What We Have Learned from Qualitative Interviews. Great Debates in Medical Dermatology. SJS/TEN: Acute reaction, or chronic disease? Concerts: 2020 2022 2024 Town Hall Meetings Skin of Colour Eye & Skin: How SJS/TEN Affects the Eyes & Skin of Color On February 29, 2024, a virtual town hall titled "Eye & Skin: How SJS/TEN Affects the Eyes & Skin of Color" raised awareness about Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN). Moderated by Coleen Lambert, it featured opening remarks from Sonia Whyte-Croasdaile, a moment of silence for victims, and insights from speakers like Francene Francis and patient representatives Karen Worthey and Jeremy Falk. Experts Dr. Rannakoe Lehloenya, Dr. Martin Huer, and Dr. Gloria B. Chiu discussed skin and ocular issues related to SJS/TEN, concluding with a Q&A session and closing remarks from Vincent Cornish on the importance of community support. Eye of the Storm Head to Toe On August 29, 2024, the virtual town hall "SJS/TEN Head to Toe" was co-moderated by Coleen Lambert and Sabrina Hundal. It opened with a welcome message, land acknowledgment, and remarks from Sonia Whyte-Croasdaile. Attendees observed a moment of silence for those affected by Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) and learned about the SJSC Move-A-Thon Fundraiser. Patient representatives Katie Farah and Kamna Narin shared personal stories, while experts Dr. Michelle Ramien, Dr. Esther Fuchs, Dr. Darren G. Gregory, and Dr. Elizabeth J. Phillips offered insights on SJS/TEN. The event concluded with a roundtable discussion, a prize draw by Frank Linhart, and closing remarks thanking participants for their contributions to awareness efforts. SJS/TEN & DRESS An in-depth webinar on Stevens-Johnson Syndrome (SJS), Toxic Epidermal Necrolysis (TEN), and Drug Reaction with Eosinophilia and Systemic Symptoms (DRESS). This session brings together medical experts and patient representatives and advocates to explore the clinical presentation, diagnosis, treatment, and long-term impacts of these rare but serious adverse drug reactions. SJS/TEN Research Study

August 18th SJS Awareness Day August 18 – SJS Awareness Day? August 18th is recognized globally as SJS Awareness Day—a day to honour the lives lost to SJS/TEN and to stand in solidarity with survivors, families, and caregivers. It serves as a powerful reminder of the importance of early recognition, informed healthcare decisions, and strong support networks. On this day, we come together to: Remember those who have passed away due to SJS/TEN Celebrate the strength and resilience of survivors Educate the public and healthcare professionals about prevention and early signs Advocate for safer drug practices and improved treatment protocols How You Can Get Involved: Join our annual virtual webinar – Featuring survivors, healthcare experts, and advocates (August 28, 2025 – details to come) Share your story – Help raise awareness through your lived experience Support our campaigns on social media with facts, resources, and survivor voices Participate in our Move/Walk/Run event – Coming mid to late summer Visit us at community events, such as our Canada Day booth in Brantford Become a member – Join our growing community and help us expand our reach and impact Together, We Are Stronger SJS Awareness Month and SJS Awareness Day are powerful reminders that every voice matters. Whether you're a survivor, a loved one, a healthcare provider, or an advocate, your participation helps bring visibility to this rare condition and ensures that no one affected by SJS/TEN stands alone. Let’s continue working together to save lives through awareness, early detection, and compassionate support. To learn more or get involved, contact us at info@sjscanada.org or follow us on social media @SJSCANADA. Activities: Complete all checks for the day! We kindly ask you to post your photo or video as you engage in these activities with #sjscantstopme Follow us on social media to hear survivors share their stories with us Wear blue, the SJS official colour, and encourage others to do the same. Change your social media profile to blue. Be encouraged 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

Community Organization We are working on this! Coming soon...

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.