"In June 2005 Greg, aged 15, took amoxicillin prescribed by our family doctor. Within 48 hours he got a high fever, blisters in his mouth and lips and inflamed eyes," says Carly Peters (not her real name pending a lawsuit). "I am a nurse and knew it was something dangerous and immediately stopped the antibiotic. I drove Greg to ER and they admitted him right away. They had to rule out other possible scenarios first, such as diphtheria, but that evening it was determined to be SJS. By that time he had suffered lesions all over his body - the doctors knew it was SJS.Greg was in terrible pain. I know he was worried but seemed to take it in stride. He stayed calm and just tried to do what he was told - mainly resting and allowing them to draw blood. He was in hospital for eight days. By the time we got home he had lost 20 pounds. He is 5'8" and weighed 119 pounds before this happened; he now weighed 103 pounds and was still in a lot of pain. His skin continued to fluff off especially in his groin area. He had difficulty going to the bathroom and it was painful to eat. The lesions in his mouth and genitalia lasted another week or so...
While Greg was in the hospital he also contracted pneumonia. He could very well have died if I didn't get him there in time. There is a distinction made between SJS: if 10 percent of your body is covered in lesions you have a quick recovery; 30 percent is when your skin peels off your body and those people tend to do worse due to infection. Luckily Greg was in the 10 percent range. But it was just a matter of time; he could have developed more lesions.
Even though I am a nurse, I was frantic. It was very scary and I felt out of control. I like to be informed and understand what is going on but I had never heard of this before. Doctors told me that they were familiar with SJS but said it is rare and one or two people in a million can contract SJS. I don't agree with them - it isn't one or two in a million. I haven't gone back to my family doctor since, because I felt like the dose of amoxicillin he prescribed was excessive and I questioned him about it in the hospital. He was very defensive and I lost faith in him.
I have investigated SJS extensively (the SJS foundation is a good resource) because of the lung damage it has caused and realized it is much more common than the doctors told me. I am very upset that Greg has a lifetime issue he must deal with. And maybe more damage could develop if he ends up with an infection.
Sophomore year was tough as he was getting back on his feet. He suffered lots of hair loss and that was embarrassing for him. Luckily his hair is finally growing back in. Today Greg is much better and he is getting his weight up. It has been almost 18 months since he came out of hospital and it has been a long haul - it took all summer for him to get his strength back. Since he contracted SJS, Greg has had a chronic cough and has recently been diagnosed with bronchiectesis - it is considered permanent lung damage and a direct result of SJS. He obviously didn't have anything like this before contracting SJS.
I am still concerned about his future and I am pursuing a second opinion with experts in lung issues in Denver, Colorado. It has cost my family a lot of money and time.
San Fransisco, CA: Susan Ward was prescribed lamictal, a mood stabilizer and anti-seizure medication, in June 2005 after suffering a nervous breakdown. "Around the beginning of August I started to get little bumps on my fingers and toes that itched and then burned," she says. "I didn't know if they were bug bites or some kind of allergic reaction.
My doctor had warned me about SJS when he first prescribed Lamicatal, saying that there was a 10-15 percent chance that I could get a rash and contract SJS and there had even been a few cases that led to death, but when I showed him these bumps he said it didn't look like SJS.
But it got worse. I went to work one day and couldn't stop itching; I pulled my shirt up and showed a fellow worker and she said, 'You have to go to a doctor - immediately.' I went to urgent care and the doctor there said it was dermatitis and sent me home with a few prescriptions that did absolutely nothing to relieve my rash.
People in my office thought it might be contagious so I had to work at home for the next few weeks. I made an appointment with a dermatologist. He had a hard time diagnosing it and sent me away with more prescriptions. Next up, a hematologist who couldn't diagnose and the third stop was the CDC - Center for Disease Control, and they couldn't figure it out. I was tested for everything, from HIV to chickenpox.
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I was still taking Lamictal! Not one person said it could have been from this drug, even with my doctor's initial warning. I had told all of them that I was on this drug.
My doctor went on holiday and I saw his replacement because the rash had now spread to my face. He said it looked like SJS and told me to discontinue lamicatal. By Christmas I only had the sores on my hands and feet and it eventually went away.
I feel very strongly about telling other people the danger and agony of SJS. Not only is it painful, people don't want to be around you - they thought I had some kind of contagion.