August is Stevens-Johnson Syndrome Awareness Month: Spreading Rare Disease Awareness

The month of August is recognized as Stevens-Johnson Syndrome Awareness Month. The goal of this event is to elevate awareness about Stevens-Johnson syndrome among the general public and in the broader medical community. Spreading awareness is important, because without it the path to improving the lives of patients will difficult if not impossible. There are plenty of ways to get involved in this year’s event.

About Stevens-Johnson Syndrome

Stevens-Johnson syndrome (SJS) is a severe type of skin reaction. Toxic epidermal necrolysis (TEN) is a more severe type in which a greater portion of skin is involved, and death is also substantially more likely. Causes of Stevens-Johnson syndrome are varied, and include certain drugs (lamotrigine, allopurinol, nevirapine) and infections from the bacteria Myocplasma pneumoniae and cytomegalovirus. Infections are a more common cause in pediatric cases. In some cases, the cause is not known, but other risk factors include HIV/AIDs and lupus. Stevens-Johnson syndrome often begins with flu-like symptoms, flat spots on the skin that develop into large blisters, and blisters and erosions on mucosal surfaces, such as the mouth, genitals, and eyes. Treatment often requires admission to a burn unit for two or three weeks. However, complete recovery can take a couple of months, and some patients are left with long-term complications afterwards. To learn more about Stevens-Johnson syndrome, click here.

August 10: Wear Shades for SJS Awareness

This is as simple as it gets: sign on to your social media platform of choice and upload a picture of yourself wearing your favorite pair of sunglasses. Don’t forget to use the hashtag #ShadesforSJSAwareness.

August 15: SJS Memorial Day

This day honors those that have died because of Stevens-Johnson syndrome. Light a candle and post of picture of it on social media with the hashtag #SJSMemorialDay.

Or you can plant a native tree or small flower garden as a way to remember SJS victims. Post a picture or video on social media using the hashtag #plantinremembranceforSJS.

August 18: World Stevens-Johnson Syndrome Awareness Day

For this year’s awareness day, get involved in the Stevens Johnson Syndrome Foundation’s Let it Glow Blue for SJS Awareness campaign. Here’s how to get started:

Light your business, house, or room blue. You can pick up a blue lightbulb from Lowes or Home Depot. Wear blue clothing, make your profile picture blue, and don’t forget to post a picture of all the blue using the hashtag #GlowingBlueforSJS.

August 22: Hat Day

Upload a picture of yourself wearing your favorite hat onto social media using the hashtag #Hats4SJSAwareness.

August 31: Virtual Walk/Run

Share a photo of the Stevie Johnson seagull mascot and a picture of yourself taking a walk/run on social media using the hashtag #SJSWalkforAwareness.

Learn more about how to get involved here.

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