Stevens Johnson Syndrome Victim "Barely Survived"

Prineville, ORIn 2002 Doris was just 18 years old when she was diagnosed with Stevens Johnson Syndrome (SJS), which led to Toxic Epidermal Necrolysis, known as 'TEN'. Since that time she has had nine eye surgeries and is scheduled for two more. " I have so much scar tissue my eyelids are turning inward and my eyelashes are growing on the inside of my eye, which is common for SJS patients," she says. "I'm trying to put on a brave face but it is difficult."

Doris (not her real name) was prescribed Bactrim to treat a bladder infection. She was supposed to be on it for 14 days but on the 12th day her eyes started burning and her lips were swollen. Her doctor told her to stop taking the antibiotic because she was having an allergic reaction. "That night I ended up in ER at our local hospital," says Doris. "I had a rash all over my body and had difficulty breathing, but they sent me home…

The next morning my mum and roommate took me to a better hospital 40 miles away. I was bleeding from my mouth and started to black out; I can barely remember getting to the ER.

They had a hard time figuring out what was wrong. From what I was told, almost every doctor looked at me but no one had seen anything like this before. Only one doctor in this huge hospital recognized SJS. I spent a few days in ICU. My family later told me that I almost died twice and they were told that I might not pull through because my oxygen levels were extremely low. When I was stabilized, they air-lifted me to the Oregon Burn Center--I spent almost a month there."

Luckily, Doris was treated with immunoglobulin, a procedure used in the treatment of immune system disorders and it is also used to improve the immune system's reaction to a serious illness: Stevens Johnson Syndrome, which can be life-threatening, had progressed to TEN, which is even more deadly. "From what I was told, I was one of the first people in the US to get this treatment," says Doris. "In 2002 it was experimental and the doctors didn't know if it would work. If not for the immunoglobulin, I wouldn't be here today.

After a few days on this drug, they told my family I would likely pull through. My parents and sister stayed with me the entire time. Almost 80 percent of my skin sloughed off and I was bandaged head to foot like a mummy. Most of my hair fell out. Photos were taken of me daily but I still can't look at them: apparently I looked gruesome. Fortunately I don't remember much about that time because I was on so much morphine, but it was terrifying for my family. It was the first time I ever saw my dad cry…

My parents got a lawyer when I was released from hospital. They knew it was an allergic reaction from the Bactrim but they had no idea how prevalent it was. I have heard of at least 10 people here in Oregon alone who have been hospitalized with SJS, although no one was as sick as me.

I've never had an allergic reaction to anything; I was the picture of health and on my way to college--about to start my life—but Stevens Johnson Syndrome almost took it away from me. I had so many plans but everything was put on hold.

I have a few choice words for the makers of Bactrim, and for any other drug that causes SJS and TEN. Warning labels are on these meds and the drug companies think that is adequate because SJS is so rare. But who reads those warnings? Even if you did read the entire warning label, you never think it is going to happen to you, not in a million years. If a drug can cause this much harm, it should never have been put on the market in the first place. Now I read warning labels on everything.

My eyes are badly damaged but I'm lucky to have a great ophthalmologist. I have some trouble with my liver and have to watch my kidneys—I get blood tests every 6 months. And my nose runs constantly because my tear ducts are scarred shut. I use artificial teardrops every few minutes throughout the day—I buy case loads. And I have steroid ointment at night to stop them from drying out; sometimes I wake up and can't open my eyes—they are stuck shut.

As for a lawsuit, my statute of limitations is up but I'm hopeful that I can join a class action lawsuit eventually—I will never give up."