Stevens Johnson Syndrome: One Compelling Story

Seattle, WAHer name is Sandra and she simply took some medication to feel better. That simple act appears to have thrown the young mother into a months-long tailspin of ill-health and hospitalization. Sandra has Stevens Johnson Syndrome, also known as SJS. Typical symptoms of SJS run the gamut from oozing eyes to Stevens Johnson Syndrome rash. But overall, a young woman who should be in the pink of health and enjoying her life and her family is instead fighting for her life.

The US Food and Drug Administration (FDA) has identified a number of drugs and everyday medicines that carry a risk for the development of SJS and its more serious cousin, Toxic Epidermal Necrolysis (SJS/TEN). There have been heartbreaking stories where parents have given their children over-the-counter medicine to help bring down a fever—a completely innocent, everyday parental care intervention—only to see their child's skin redden and blister, their eyes oozing shut.

Sandra too, took something. An innocent act, that has left Sandra hospitalized since February with SJS/TEN "and resulting complications," her blog, written on her behalf for the benefit of friends and family, states.

"It has been a struggle with many ups and downs, but we are hoping for the best."

Sandra was hospitalized in early February, and a couple of weeks into her hospitalization Willem, her partner, summarizes in a blog entry the first conversation he was able to manage with Sandra in 2 and one-half weeks.

"I asked her if she knew why she was in the hospital and she shook her head no. I reminded her of the allergic reaction to the medication and asked if she remembered being at Virginia Mason. She nodded yes. I reminded her of being in the ER at Harborview and the conversation with the doctors about surgery, she nodded yes. I explained that she got pneumonia and got very sick and has therefore been sedated for 2 weeks instead of 2 days. I asked if she understood now why she was in the hospital and she nodded yes."

There is a photo on the blog of the couple in happier, and healthier times—taken with a darling little girl sandwiched between them. It is unthinkable to imagine this vibrant young woman struggling to survive in hospital, fighting for her life.

In February she suffered the first of two strokes while in hospital. The second occurred March 3rd. Willem, in the blog, recounts a conversation he had at the hospital with a physical therapy doctor.

"He said that stroke victims basically recover most of whatever movement they will ever recover in the first 6 weeks," Willem writes, summarizing his conversation with the medical professional. "So you might be able to flop your arm around after 6 weeks, and spend the next 10 ½ months working on building muscles and gaining fine motor control like being able to pick up a glass or touch finger to thumb.

"Since she has nearly zero movement now, and it's been 8 weeks, he believes she will not regain much if any function from her left arm and leg. She will likely spend the rest of her life in a wheelchair. Permanently disabled, I guess is the term for it.

"So that is the situation we have to be prepared for, it seems…"

For Mother's Day there's a picture of Sandra with her arm around little Adriana. A touching reunion of mother and daughter. Sandra is managing a smile. She is, lying in the hospital bed that has been her home for many months, a distant departure from her former self.

That was May 11th. A month goes by. It's now mid-June, and "Sandra had a pretty rough week, with the roughest spot Tuesday," Willem writes. "On that day there was a point when she was basically starving for air—a problem that the respiratory therapist couldn't solve no matter what she tried." Their doctor had to rush in and was able to get her stable again. "I heard about this from the RN and RT (respiratory therapist) on Wednesday and they were speaking in very grim terms. The RT had been with her for 3 or 4 days and said she had been getting worse and worse. They both seemed to feel that she basically might not pull out of it and would continue to slip…"

However, recounting a subsequent meeting with their doctor Willem is once again buoyed with hope, because their doctor "basically still feels the same as before—she is very sick, it will take another 2-3 months perhaps, but she still has a good chance of getting off the (ventilator) in that sort of time frame."

The last blog entry is June 18th, during which Willem recounts a meeting with his doctor, more than four months after Sandra experienced the allergic reaction and was hit with SJS/TEN. A young woman in her prime, reduced to a critically ill patient in hospital for many months—and it doesn't appear to be over just yet.

"Do we have a long way to go? Yes. Can I tell you exactly how long? No. But probably a few months. Can I guarantee you she will survive? No. She could still get hit with something out of left field and her condition is still tenuous. But does she have a good chance for recovery? Yes. Is she improving? Yes. Slowly…"

It was just over four years ago, in May 2006 that the FDA updated its list of drugs and medications that carried a risk for the development of Stevens Johnson Syndrome. The complete list can be found on this site. Those at greatest risk of developing Stevens Johnson Syndrome rash, or more complicated adverse effects are extremely allergic to drugs such as Ibuprofen together with other painkillers and antibiotics. Most cases occur in adults 20-40 years of age, but SJS has been seen in children as young as 3 months.

Sandra's is just one heartbreaking story, of many.