Your patience is appreciated as this valuable site is being created. Please return frequently for updates.


YOUR HELP IS NEEDED TO CONTINUE TO BUILD THIS INTERNATIONAL RESOURCE HUB


After attending the SJS/TEN Conference in Vancouver in 2019, I recognized the large gap that existed between patients and the healthcare system, inspiring the vision for this international resource hub. This project has been 6 years in the making, and despite many personal roadblocks, the goal has remained the same: to help lessen the gap through connection, education, support and access to reliable resources.


S.T.I.A. was created to serve as one central starting point where individuals and families affected by SJS/TEN can more easily find and access the already trusted research, support networks, clinics, educational information and community resources from around the world, helping to connect and extend the reach ot the valuable work already being done across the global SJS/TEN community.


To continue building this resource hub, collaboration is needed from the SJS/TEN global community. I AM SEEKING THE FOLLOWING:

-Links to existing foundations, advocacy organizations, support groups, educational websites and established trusted medical guidance.

-Photos shared with permission to help accurately represent the realities of SJS/TEN

-Information about ongoing research studies, clinical trials, scientific journals, and medical resources

-Assistance in identifying reputable medical resources and standard care practices

-For the healthcare professionals and evidence-based care practices, please connect if you are involved in SJS/TEN education, treatment, or research. The hope is to link Institutions, medical centres and research facilities to the hub. 


If you are interested in assisting with any of the above, please complete this Google Form

https://forms.gle/inn6n1tuB16ohUWZA

or email angie.lowe@stia.ca


. Together we can help improve awareness, education, support and access to reliable information for the global SJS/TEN community. Let's lessen the gap!


*This hub creation is Phase 1 of what I hope will become part of a larger project. If you are a medical professional and are interested in improving access to experienced medical insight for SJS/TEN by better connecting patients, families and healthcare providers with professionals who have direct knowledge of these conditions, I would love to connect to share my vision.


S.T.I.A.  
SJS/TEN INTERNATIONAL ALLIANCE
A Global SJS/TEN Connection

What is Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN)?

Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis (SJS/TEN) are rare and potentially life threatening reactions to medications or virus' causing the skin to rash, blister then slough off. Mucus membranes including eyes, mouth and genitals are also affected. TEN is a more serious form of the disorder, affecting over 30% of the skin and mucus membranes.

SJS/TEN affects 1 in 1 million people and is fatal for up to 50% of those affected. Survivors most often suffer permanent long-term complications including vision loss/impairment, breathing complications and disfigurement including scaring and nail loss. Post-Traumatic Stress Disorder (PTSD) is prevalent in the majority of survivors. 

SJS/TEN requires immediate medical attention. It is a disorder for which there is no cure. Stopping the trigger medication (if known) and management of the symptoms is the most widely accepted course of treatment.

Symptoms

Recognize the symptoms of SJS/TEN which require immediate medical attention.

Diagnosis

Timely and accurate diagnosis is crucial to the effective management of SJS/TEN.

Acute Care Treatment

Supportive treatment and preventing further damage are imperative to survival and recovery.

Aftercare

For survivors, proper aftercare can significantly impact a person's recovery and quality of life.

Patient Support

Connecting with others who have travelled a similar journey can bring encouragement and comfort.

Patient Studies & Scientific Journals

Continued research assists in the detection and diagnosing of SJS/TEN ensuring increased quality of care.

Medical Professionals

Standard care practices to assist in diagnosing, treating and caring for SJS/TEN patients.

FAQ's

Find answers to frequently asked questions regarding SJS/TEN as answered by medical professionals.