Community Gathers for SJS Awareness Walk

The close knit Algiers community in New Orleans united together once again for a charity walk to raise awareness and money for Stevens-Johnson Syndrome (SJS).

SJS is a highly rare skin disorder that attacks the mucous membranes and results in painful blistering and peeling inside and outside the body. This makes it extremely difficult to eat, swallow, and even pee. To learn more about Stevens-Johnson Syndrome, click here.

The NOLA neighborhood put on their running shoes and took to the streets on General Meyer Boulevard, which is a hub of activity within Algiers.

It’s called the Team Jasmin SJS Awareness Walk, and it has been an annual event in the past four years. The disease is so rare that approximately 20,000 people in the entire country are diagnosed with it. The walk is intended to shed light on the small percentage of people suffering from the skin disorder.

The mascot behind the walk is Jasmin Bindom, who was only a high school junior when she found her skin begin to deteriorate and peel off. She spent several weeks at the burn unit in a state of confusion before hearing the official diagnosis, Stevens-Johnson syndrome.

The cause of this skin deterioration is a bad reaction to over the counter and prescription medication. If not taken care of right away, the skin loss could be fatal.

Each participant in the walk made a $25 donation that would benefit the ongoing research and marketing promotion for the disease. Speaking at the event was Dr. Shondra Williams, who has seen and worked with SJS first hand. She spoke of the signs and symptoms and how to keep your eyes out for the disorder.

It starts with flu-like symptoms that rapidly spread into red rashes. Following the rashes are blisters as the disease causes cells to burn from the inside out. That’s when the skin begins to peel clean off.

Pastor Eileen Lamar-Johnson offered inspiration and words of enlightenment. She assured those with the disease that they are not alone.

You can visit to learn more about SJS and find ways to contribute.

Read more about this story on The Times Picayune.

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