Indianappolis, INFor Cierra, Stevens Johnson Syndrome couldn't have happened at a worse time. At the age of 18, Cierra wound up in hospital for about three months and spent 26 days on life support. "My mother had to talk me into going to the prom," says Cierra, "because I was so self-conscious about my facial scars from SJS."
Now 23, Cierra still has the scars.
"After this was all over and I finally went home, I didn't want to be seen, I didn't want to go outside because I had so many scars on my face… My mother said it could have been worse—I think anything worse would have been death"
She had been prescribed Lamictal to help with epileptic seizures, but at the time she had no idea that Lamictal came with side effects so serious that the FDA required the boxed warning on this drug to include reports of "severe, potentially life-threatening rash, including Stevens-Johnson Syndrome (SJS) and TEN." LawyersandSettlements has interviewed many people who developed SJS from a variety of drugs, including another young woman who took Lamictal.
"A few weeks after taking Lamictal my lips began to swell and I developed a high fever," says Cierra. Her mother took her directly to ER but the doctors had no idea that she had developed an allergic reaction to a drug. In fact, they continued giving her Lamictal intravenously!
Cierra got sicker. "All I remember is what my mother told me," she says. "The doctors called another hospital to find out if anyone had seen blisters like this—at first they thought it might have been herpes. After a few hours I went into a coma and I was transferred to the burn unit at Riley hospital for Children.
"There was so much swelling that the doctors told my mother I needed to have a hole cut in my throat to put a tube, in but my mom told them no. Instead I was put on a ventilator so I could breathe. I was on life support for 26 days and they shaved all my hair off.
"When I woke up, I was terrified, but my mother was by my side. I thought, 'This can't be me.' I had no idea what had happened. A few weeks later (I went into hospital December 28 and was released March 13) my mom told me what had happened.
"To this day I still don't know when the doctors discovered that Lamictal had caused the SJS. As soon as I was able, I went to rehab to try and remember things. One of my doctors said a side effect of SJS is blindness. In a way I am lucky, but I don't have any more tear ducts—SJS does this. I am putting in eye drops every few hours, whenever I am awake.
"After this was all over and I finally went home, I didn't want to be seen, I didn't want to go outside because I had so many scars on my face. I had to wear special gloves because my fingernails and toenails had fallen off. It was so embarrassing for me. I had to finish my last year of high school at home but I managed to graduate. And I went to the prom—my dress covered up most of me and an aesthetician put a lot of makeup on me. My mother said it could have been worse—I think anything worse would have been death.
"Today I feel great but I am still self-conscious about my skin. And my eyes feel horrible—they always will. I had to have surgery on my eyes and will need more surgery. They hurt all the time, constantly irritating. And I still have to take meds for my seizures; it was scary the first time I took a new drug, about as scary as my first seizure when I was 16.
"I have noticed that so many people are getting SJS. I used to work in a pharmacy as a pharmacy tech. I talked to a lot of pharmacists about this and after I recovered from SJS they asked me to talk to their customers about what happened to me, because we had a lot of customers addicted to meds, and so many meds can cause SJS.
"A baby got SJS and went blind. One guy was on prednisone and he has to get his legs amputated. These meds hurt you more than they help you. I think people have to try and take better care of themselves. Some people listened when I talked about SJS and others asked what happened to me. They thought I had some disease—nobody I talked to knew about this syndrome, except the pharmacists, who seem to know more than most doctors about SJS."
While everyday medications have been known to trigger SJS, other drugs used to treat specific conditions have also been singled out. Blogger Phylis Feiner Johnson, a former epileptic, posted that Stevens Johnson Syndrome is a risk for any person taking Dilantin or Lamictal.
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