She Fought Stevens Johnson Syndrome For Ten Years Before She Died at 24

October 27, 2012, 10:30AM. By Gordon Gibb

Mechanicsburg, PAHer name was Lindsay Anne Estacio and she leaves a big hole where her zest for life, her spunk and generosity once lived. Her love, and her courage. And while she was only 24 when she died, her short life appeared to have touched many in the same way as someone might have, having lived a full lifetime. It should be noted that nowhere in her story, as told by the Patriot News (9/22/12), would the reader find a cause of death. However, Estacio waged a long and courageous battle with Stevens Johnson Syndrome.

Her obituary, in fact, requested donations to the Stevens Johnson Syndrome Foundation, located in Westminster, Colorado, in lieu of flowers.

Stevens Johnson Syndrome—or SJS—is a rare, but horrid condition often triggered by medication. Symptoms can begin as a Stevens Johnson Syndrome rash and quickly escalate to skin lesions so pronounced patients are usually treated in burn units of hospitals. It can leave the patient scarred, blind or with eyes that are chronically light sensitive. Some have died from it.

In Lindsay's case, the resident of Mechanicsburg, Pennsylvania was just 14 when her Stevens Johnson Syndrome symptoms began to emerge. Following air transport to the burn unit at Crozer Chester Medical Center, Lindsay was officially diagnosed with SJS.

The teen would endure painful blisters over 95 percent of her body, and remained on a ventilator for weeks, according to the Patriot News. She eventually recovered, but the process took months and she was left with permanent damage to her right eye.

And while it appeared that Lindsay had recovered from her initial and most serious bout with SJS, it became apparent the condition continued to dog her until the end—a period of about ten years. Her mother told the Patriot News that while her daughter never complained, she would sometimes confide, "I'm tired that everything I want to do is being ruined because of SJS."

Lori Lewis added that often her daughter would ignore her symptoms in order to indulge in something she really wanted to do. "Don't worry, everything will be just fine," Lindsay would say.

But it wasn't. Estacio died August 19th at the MS Hershey Medical Center, in her 25th year. What caused Estacio's Stevens Johnson Syndrome skin disease in the first place? Was it a reaction to an over-the-counter medication? That's never been formally articulated.

However, according to a video featuring Lindsay that appeared on the OWN network, scar tissue stemming from SJS can continue to grow long after the initial crisis of the condition has passed.

In the video, which was shot when Lindsay was 22, it was revealed that she had over 100 painful blisters on her body at the time she was diagnosed with Stevens Johnson Syndrome. Her recovery took months. Sadly, in the video Lindsay talks about her hopes and dreams for the future, her goals. She wanted to become a nurse, so she could help others. Her mother also appears, saying how happy she is that her daughter is alive.

That cannot be said today. Stevens Johnson Syndrome robbed Lindsay Anne Estacio of her adolescence, and ultimately her life.