SJS Awareness Month

When I was eight years-old my mother took me to the children’s hospital in Denver to visit my cousin. She was in an isolation unit, bundled from head to toe in white bandages, and they didn’t have a gown or gloves small enough to fit me. As my mom tied back the oversized protective gown and mask she told me to not be afraid and to try not to cry when Julie saw me because we were trying to keep her calm.

I am the oldest of my cousins and for many years we lived together like siblings, my grandmother watching all of us together while our parents worked during the week. A typical weeknight meal included 10 or more people and I knew it was time to wake up when I could hear my grandmother making coffee for my mom and aunt in the kitchen.

When Julie went into the hospital, I was the only child old enough to see her and we didn’t know when or if she would be coming home. She was experiencing a severe allergic reaction that we now know was Stevens Johnson Syndrome or SJS. Julie was literally burning from the inside out.

The isolation room was to protect Julie from bacteria while her skin fell off in sheets and she was bandaged like a burn patient while the reaction ran its course, leaving no part of her body un-impacted by the chemical like fire that had run out of control.

Weeks passed before Julie was released to come home, but she was changed. No longer the happy 11 month old baby starting to walk who could chase after the older kids. Fed through a feeding tube and having lost the sight in her right eye, the rest of the children in our family didn’t know what to do. I remember listening to someone try to explain to them that it was Julie; my sister was almost 2 and my cousin William was 3, they were scared by the tubes and the sunglasses that she now had to wear to protect her fragile eyes from light.

At the time, my Aunt found a single article in the medical library at Children’s Hospital. She was told by doctors and nurses that SJS was so rare and unusual that it was unlikely that she would ever meet another family who had experienced it. In 1995 she started the Stevens Johnson Syndrome Support Group and has since met with hundreds, if not thousands of families and patients around the world.

August is SJS Awareness Month, in honor of the Julie’s time in the hospital, and each year proclamations are sent from governors across the U.S. declaring recognition of the month. Allergic drug reactions are one of the leading causes of death in the United States although only 1% of all reactions are reported to the FDA.

Today, over 21 years later, Julie carries the scars of her battle with SJS. Her eyes have been fitted with specialized lenses to help lower the impact of dry eye syndrome and photophobia, and she carries a cane if she’s having a particularly bad eye day. Last month she underwent experimental stem cell therapy in hope to repair the damage that SJS continues to leave on her body. Through all that, Julie is one of the strongest people I know. She is heading into her senior year of college, finishing an education degree and getting ready to start student teaching.

It has not been an easy journey to where she is today, and Julie’s fight against SJS continues. If you’d like to learn some more about her story, check out her fundraising page where she is accepting donations towards the treatment continues to need. While she underwent the Stem Cell therapy earlier this summer, she is working towards finishing paying for the procedure and will likely need a follow up trip later this year.

There was no way for anyone to know that Julie was going to have a reaction to a medication that was supposed to help her, and unfortunately the lack of awareness about allergic reactions is why dozens of SJS patients are left with scars that will shape their lifetime. Lend a hand this August and help spread awareness about allergic drug reactions so that no family has to experience what we did.

Learn more:
SJS Fact Sheet
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