A Brush with Death: My Introduction to Steven-Johnson Syndrome

One day, during high school, I was called to the front office. My mom was waiting there for me and, without explanation, she hurried me into the car. We drove straight to the hospital, my mom resisting the urge to speed as she gripped the steering wheel so tightly the tips of her fingers white. I had no idea what was happening. All that I had managed to piece together was that my sister was having some kind of allergic reaction. 

We sat in the waiting room, waiting for the physicians tending to her to give us an update. The doctor finally came out and told us they weren’t certain what she had and they didn’t have the facilities to treat her, so she would be transferred to a hospital that was better equipped. 

When she arrived at the new hospital, the doctors quickly recognized that she had a rare disorder called Steven-Johnson Syndrome (SJS). At this point, her body was covered with large blisters, inside and out. 

The doctors attached her to a machine that would make sure she kept breathing, and so began a multiple-month fight for her life. 

Along the way, the doctors put her into a medically induced coma and kept her in the intensive care unit under constant supervision. The disease progressed to Toxic Epidermal Necrolysis, a more serious version of SJS, and her life teetered on the edge while we sat by, watching helplessly. We visited her multiple times a week for months and spoke to her as the machines keeping her alive hummed, hissed and beeped back at us. 

Thankfully, our story has a happy ending. She was fortunate enough to fully recover, and has gone on to be happily married. Today, she has two beautiful children. We were lucky. She was lucky.

It’s difficult seeing a family member on the brink of death, and the recovery was even more difficult for my sister. In the months following her recovery, she researched everything she could about her disease and eventually became acquainted with the Steven Johnson Syndrome Foundation. She has adapted her life to avoid things that may trigger another SJS flare-up, including avoiding a number of prescription drugs as well as over-the-counter pain relievers. She has otherwise had a happy, healthy life since the disease thanks to the care team and physicians who saw her through the worst of the disease as well as the recovery. 

While SJS is rare, it affects thousands of people every year. Consider making your next donation to the Steven Johnson Syndrome Foundation, which serves as a support, awareness, and information source for those who suffer from, or have suffered from, SJS, as well as their family members. 

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Jorge Parra

Osteopathic Medical Student - 2nd Year (OMS II)
Pacific Northwest University of Health Sciences

Jorge Parra