August 18th

When is Stevens-Johnson Syndrome(SJS) Awareness Day/Month?

August 18th and the month of August are SJS awareness days/months. 

The international Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis (SJS/TEN) community has embraced August 18th as its formal awareness day after the SJS foundation received a formal proclamation from the United States government.

 

SJS Canada joins the global community to celebrate this day while striving to gain formal recognition for this day in Canada.

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Why do we celebrate SJS Awareness Day/Month?

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We celebrate SJS Awareness Day and Month with the goal of raising awareness and educating the public about Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis. During August, we have a variety of events leading up to August 18th (SJS awareness day) through August 31st. Ultimately, we hope the medical community and the general public become more familiar with SJS/TEN, its early signs, and the life-altering symptoms that affect survivors.

Throughout August, the awareness activities include: 
●    Multiple social media blasts/infographics/infomercials each week
●    Community awareness virtual/in-person sessions 
●    The town hall will be held at the end of August, and medical experts, researchers, and scientists within the SJS/TEN field will be present.
●    This town hall event offers public awareness, education, and research updates as well as addressing some common issues and concerns on the subject. There are also SJS/TEN patient representatives who lovingly share their stories to help bring and spread awareness of the illness. Other days during the month highlight different segments of the illness.

On August 18th, the following usually occurs:
●    Social media blast with informational facts about the illness. 
●    Survivors share their stories on social media
●    We encourage everyone to wear blue, the official colour of the SJS.
●    We motivate each other and tell someone about SJS/TEN throughout the day 
●    An organized virtual/in-person SJS/TEN awareness walkathon 
●    Survivors get together within a virtual space with a facilitator to share their experiences and support each other. The recording will later be uploaded to our website to support others.
●    Distribution of SJS awareness materials within the community.

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

SJS is a rare, severe skin condition brought on by an adverse reaction to a medication. Countless drugs can precipitate SJS, but the most common medications include non-steroidal anti-inflammatory drugs (e.g. ibuprofen), antibiotics (e.g. penicillins), anticonvulsants (e.g. phenytoin), and allopurinol. SJS can affect anyone taking medications but typically targets those under the age of 30.

 

SJS starts with flu-like symptoms and is followed by a painful rash that spreads over the body, blisters, and peels. SJS and TEN are differentiated by the proportion affecting the entire. When less than 10% of the entire body is involved, it is recognized as SJS; over 30% is called TEN. Without an early diagnosis, SJS/TEN can lead to systemic bacterial infections, pneumonia, multiple system organ failure and death. The risk of death for SJS is approximately 1-5%, and for TEN 25%-35%.

 

However, survivors of SJS/TEN have life-long complications affecting their eyes, hair, genitourinary tract, and more. While there are no definitive documented statistics on the effects of SJS/TEN within the Canadian population, there are over 50 known cases nationwide, including children, teens, adults and elders.  The cases include both males and females of a variety of races.