Apr 13 min read

SJS Awareness Month Challenges | This is how you can join the fight.

During August, we have some challenges you can join to support us in our fight.

Check it out.

August 3rd

Sunglasses Day

Challenge: Support SJS survivors affected by photophobia by wearing dark glasses indoors, outdoors, and at night.

Light sensitivity/photophobia is one of the long-term effects of SJS/TEN, as a result some survivors experience severe difficulty dealing with bright light both indoor and outdoor. Some describe this experience as temporary blindness.

The next time you see an SJS/TEN survivor wearing dark glasses inside or during the night, think: this is not a fashion statement; it’s a survival statement.

August 9th

Visual Accessibility Day

Challenge: Explore the visual accessibility function on your smartphone and try using these features! Also, be mindful of the e-mails you send today; think about the font size, colours, and spacing. How would these affect individuals with visual impairment?

Visual impairment is a decreased ability to see that cannot be fixed with corrective devices such as glasses or contacts. Many SJS/TEN survivors have long-term complications to their eyes even after leaving the hospital.

These complications often make it difficult for SJS/TEN survivors to read particular writing or see specific images. Did you know that nearly all smartphones have accessibility features to help overcome sensory impairment?

August 17th

Virtual Town Hall

Challenge: Join us at our Virtual SJS Town Hall

Please join us at the SJS Town Hall where we will be sharing updates, connecting with keynote speakers and listening to the harrowing stories of SJS / TEN survivors.

This town hall event offers public awareness, education, research updates as well as addressing some common issues and concerns on the subject. SJS/TEN patient representatives lovingly share their stories in an effort to help bring and spread awareness of the illness.

August 17th-19th

Virtual Move-A-Thon

Challenge: Join SJS Canada from ANYWHERE as part of our Virtual “Move-a-Thon.”

We are moving our bodies in support of Stevens-Johnson Syndrome Canada (SJSC) from August 17-19.

August 18th

SJS Awareness Day

Challenge: Complete all checks for the day!

Don't forget to Social media blast with informational facts about the illness
Follow us on social media to hear survivors share their stories with us
Encourage others to wear blue, SJS official color
Be encouragement 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

August 23rd

Hat Day

Challenge: Support SJS/TEN survivors by wearing a broad rim hat! Check your closet – how many clothes can you identify with UPF? Wear your UPF clothing if you have any! And remember to wear sunscreen of at least SPF 30, reapplying every 80 minutes!

Many survivors have to wear broad rim hats and other head covering to protect themselves from the sun as their skin has become very sensitive.

Along with the dark glasses, the hat shades the eyes and help allow them to cope with the effect of the sun on their eyes. Some survivors also wear UPF (ultraviolet protection factor) clothing to protect their body from the sun’s UV rays.

August 29th

Eye Care Day

Challenge: Remember to give your eyes a rest during your workday by using the 20-20-20 rule! Every 20 minutes, shift your eyes to look at an objective 20 feet away, for 20 seconds! (Have dry eyes? Use artificial lubricant or try a warm compress! Wet a clean washcloth with warm water and wring it out until somewhat dry. Place the washcloth over your closed eyes for at least 1 minute)

The pain of SJS/TEN is so excruciating, sometimes just opening the eyes causes severe pain. As well some survivor’s eyes lids were sealed shut for days because numerous sores covered their eyes.

When the eye lids were finally open again, some survivors sustain severe vision loss, and for some their eyelids never opens resulting in blindness.