SJS Survivors are Collateral Damage

October 9, 2006, 12:00AM. By Jane Mundy

Creswell, ORBill Hamann was only ten years old when he was diagnosed with Stevens Johnson Syndrome after taking over-the-counter medication.

Thirty-eight years later, he still remembers the agony of SJS, both physically and mentally. "When I got better, the hardest part was going back to school and the kids calling me ugly," says Hamann.

"When I was ten years old I contracted a virus and the doctor gave my Mom a sample bottle of Nyquil. Within 24 hours after taking a dose, I got bumps all over my body. I remember how much my skin hurt and the next morning they got bigger then developed into huge blisters; it was really horrible.

My Mom took me back to the doctor. Fortunately, he had seen a case of SJS one year prior so he knew how serious it was and I was rushed to the hospital, where I stayed for one month.

I could only be touched on the very top of my head because anywhere else was too painful. I also remember vividly that they had to keep me in sterile bedding, and every time I rolled over it would rip the skin off my body - I remember screaming in agony.

SJS wasn't over for me, even when I started to get better. The hardest part was when I went back to school and the kids called me ugly. I had scars all over my body. All through my childhood and teenage years I felt ugly. I don't think I was that ugly (and neither does my girlfriend) but it did take me a long time to find a girlfriend. In my early years I latched onto a few women who weren't good for me simply because they were the only ones who gave me any attention. But I didn't lose my sense of humor!

I will never be completely recovered - especially my eyes. They were badly burned and I had to wear compresses on my eyes for a long time. My skin eventually grew back but the nerves are permanently damaged. I have to deal with my eye problem constantly.

My eyes were the worst affected. I have ingrown eyelashes and severe dry eyes. My only relief is that I wear a bandage contact lens to keep my cornea from being scratched and I have to use artificial tears about 40-50 times per day, every day. I spend about $130 per month just for 'Artificial Tears'. And I have to take special care of my skin because it is so dry. I have to constantly put moisturizer all over my body and of course I am very limited regarding where I live - I wouldn't survive in Arizona; I can't stand being in dry areas.

As I age, there are other implications. I now face joint problems and because my fingernails melted I have 'mashed up' fingernails that not only look awful, they also ache.

My parents told me that many years ago they talked to the doctor about giving me Nyquil and they asked if he would be willing to make a statement to a lawyer. The doctor declined and wouldn't get involved. At that time we had no other recourse; we couldn't afford to hire a lawyer to go after the doctor. Then I did some investigating on my own and stumbled upon the SJS website - I thought it was rare and was shocked that so many people have it.

I thought about calling the makers of Nyquil but it was so long ago. But at least I can warn people about it. Before people take these over-the-counter drugs, they should try to do some research into auto-immune reactions. Somebody should be doing something to find a common thread - especially with sulfa-based drugs. There is a list of common products that cause SJS but the research should be better. It's all about money and who will fund the research? Not the drug companies.

Victims of SJS are just collateral damage - even the people who are able to successfully pursue a lawsuit are collateral damage because the drug makers just pay them off and move on; I think they would rather pay lawsuits than invest in research and have these drugs taken off the market."