SJS AWARENESS DAY
When is Stevens-Johnson Syndrome(SJS) Awareness Day/Month?
August 18th and the month of August is SJS awareness day/month.
The international Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis (SJS/TEN) community has embraced August 18th as its formal awareness day after SJS foundation received 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.
Why do we celebrate SJS Awareness Day/Month?
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 the month of August, we have a variety of events leading up to August 18th (SJS awareness day) through to August 31st. Ultimately, we hope that 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 blast/infographics/infomercials each week
● Community awareness virtual/in person sessions
● Town Hall at the end of August including medical experts, researchers and scientists within the SJS/TEN field.
● This town hall event offers public awareness, education, 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 in an effort to help bring and spread awareness of the illness. There are also other days during the month that are used to highlight other segments of the illness.
On August 18th the following usually occur:
● Social media blast with informational facts about the illness.
● Survivors share their stories on social media
● We encourage everyone to wear blue, the SJS official color.
● 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 and share their experience and support each other. The recording is later uploaded on 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. It 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 is no definitive documented statistics on the effects of SJS/TEN within the Canadian population, there are over 50 known cases nationwide that includes children, teens, adults and elders. The cases are inclusive of both males, females and a variety of races.