top of page
Search

August Is Global SJS Awareness Month: The Power of Awareness and What You ShouldKnow

Stevens–Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) are rare but

devastating drug reactions that can quickly escalate from flu-like symptoms to widespread skin detachment and mucosal damage. Survivors often face long-term complications such as vision impairment, chronic pain, and emotional trauma.


That is why August is recognized worldwide as SJS Awareness Month, with SJS Awareness Day on August 18. It is a time to share stories, honor those we have lost, and advocate for better recognition, earlier diagnosis, and comprehensive care.



Why Awareness Makes a Difference


Despite their severity, SJS/TEN remain underrecognized by the public and even some healthcare professionals. Increasing awareness is key to improving outcomes:


● Early diagnosis saves lives. Initial symptoms such as fever, sore throat, red eyes, or a rash

are often mistaken for common viral illnesses. Awareness can help patients, families, and

clinicians recognize the signs earlier and intervene before complications worsen.


● Survivors need long-term care. Many survivors face chronic ocular issues, skin

sensitivity, fatigue, and post-traumatic stress. Increased awareness helps validate these

experiences and supports access to multidisciplinary follow-up.


● Lack of awareness harms trust. Survivors have described feeling confused and dismissed

by healthcare providers unfamiliar with SJS/TEN. Recent research emphasizes the need

for clinicians to recognize not just the physical signs, but also the psychological impact of

the condition.



“As a survivor, I know first-hand the fear and isolation this condition brings. SJS awareness

matters because early recognition can save lives, and understanding can save dignity. Awareness

means fewer people will suffer in silence, more will get timely care, and patients and survivors

will have the support they need to heal.”


Sonia Whyte-Croasdaile, SJS/TEN Survivor



How You Can Get Involved


You do not need to be a survivor or clinician to take part in SJS Awareness Month. Small actions can make a big difference:


● Wear blue on August 18 to support SJS Awareness Day.


● Share facts or survivor stories to help raise awareness and make survivors’ voices heard.


● Follow us on social media at sjs.canada on Instagram and

Stevens-JohnsonSyndromeCanada and spread awareness by using hashtags like


● Support advocacy organizations by participating in virtual campaigns or spreading

educational resources.


● Become a SJS Canada volunteer and help expand reach and impact.


● Support an event! All are free and virtual! Find out more information at:



Looking Ahead: Strengthening Advocacy and Care


While progress has been made in acute care protocols, ongoing gaps remain:


● More research is needed to better understand genetic risk factors, pathophysiology, and

effective therapies.


● Access to long-term multidisciplinary care is essential. This includes dermatology,

ophthalmology, pain specialists, and mental health support, which are not always readily

accessible to patients.


● Education within healthcare systems is critical. Increasing awareness among providers

improves recognition, referral pathways, and survivor support.



Conclusion


SJS/TEN are rare, but for those affected, their impact is lifelong. Awareness Month is more than a calendar event. It is a global effort to educate, prevent, and support. Whether you are sharing a post, wearing blue, or learning something new, your voice helps make SJS/TEN visible.


This August, let us shine a light on SJS/TEN and ensure no one faces it alone.



References


1. O’reilly P, Walsh S, Bunker CB, Ryan S, Natella PA, Colin A, Simpson J, Barry LA,

Meskell P, Dodiuk-Gad R, Coffey A. The quality-of-life impact of Stevens–Johnson

syndrome (SJS) and toxic epidermal necrolysis (TEN) on patients’ lives: an interpretative

descriptive qualitative study. British Journal of Dermatology. 2025 Jan;192(1):85-91.


2. SJS Canada. SJS Awareness Day. https://www.sjscanada.org/sjs-awareness-day


3. Stevens–Johnson Syndrome Foundation. SJS Awareness Month.

 
 
 

Comments

bottom of page